Things have settled down now. I had just a single day of treatment on Monday (half the usual dose) with the usual side effects, and rest period to get over it.
Looking back on my visit to the Mayo Clinic, I came away feeling perhaps it was a bit of a waste. It's strange - you go to a place like that with an expectation that they will find something very bad, and have the ability to fix it. Then after all the the effort, pain, and expense, and all they do is confirm something you already know! A tinge of disappointment. Yes, relief as well that there is nothing really serious or terminal. Together with that, is the sinking feeling that now I really do have to move to acceptance of my condition of multifocal motor neuropathy, and plan to deal with it for the rest of my life.
From a medical perspective, the Mayo is very impressive. The trip and the outcome has helped me reflect on the level of care I have been receiving until now. If the Mayo ranks a 10/10, then I would say that the medical resources and care available here in Melbourne, Australia probably ranks about 8/10 (my neurologist concurs with my assessment, although he would hardly be one to argue such a point). I am very fortunate to have access to excellent doctors (my neurologist did time at Mayo, and lots of other Australian doctors do same), and the public health system means that my IVIg is free.
On that basis, someone like me going to the Mayo for an assessment is only of moderately incremental value. If I lived in a small town in the US that didn't have such resources, I would have grounds to be less trustful of my diagnosis, and therefore a trip to a major centre would be easier to justify.
Of course this is all with 20/20 hindsight. Still, yet another useful lesson. Time (and quite a long time) will tell if they treatment approach suggested at the Mayo proves to be valuable.
Friday, November 20, 2009
Sunday, November 15, 2009
Blood Patch
With apologies to Neil Young, it's a case of out of the arm, and into the back. That's probably enough of the song lyric mash-ups too. The blood patch is a procedure where they draw some blood out of your arm, and inject it into the spot where they previously did the lumbar puncture (or epidural block, or whatever). The blood congeals, and closes up the hole in the dura and thus stops the CSF leak. That's what is supposed to happen, and the good news is that it worked! The headache subsided after a short time and have all but gone. I've been resting all weekend, and looking forward (not!) to another infusion on Monday.
I found the protocol differences between Australian hospitals and the Mayo clinic to be quite interesting. At the Mayo, lumbar punctures for the purpose of extracting some CSF are mostly done by a technician without the aid of imaging, and they only require you to rest for 30 minutes following the procedure. When I had mine done earlier this year, they did it under x-ray to make sure they found the right spot. It could be my neuro requested that because he knows how much I hate needles, and to make the experience less uncomfortable. The other thing they do here is make you lie flat for 2-4 hours afterwards, to ensure the hole closes, and minimize risk of a CSF leak.
This might just mean that my Mayo Clinic experience is finally over, some days after my return. Have been reflecting on the whole thing, and will post about that shortly.
I found the protocol differences between Australian hospitals and the Mayo clinic to be quite interesting. At the Mayo, lumbar punctures for the purpose of extracting some CSF are mostly done by a technician without the aid of imaging, and they only require you to rest for 30 minutes following the procedure. When I had mine done earlier this year, they did it under x-ray to make sure they found the right spot. It could be my neuro requested that because he knows how much I hate needles, and to make the experience less uncomfortable. The other thing they do here is make you lie flat for 2-4 hours afterwards, to ensure the hole closes, and minimize risk of a CSF leak.
This might just mean that my Mayo Clinic experience is finally over, some days after my return. Have been reflecting on the whole thing, and will post about that shortly.
Friday, November 13, 2009
The tap that keeps on tapping
With apologies to Cyndi Lauper, there's a hole in my back that comes all the way from Rochester. The headache that I've had since last Friday is most likely a result of a CSF leak. This is a side effect of the lumbar puncture I had at the Mayo Clinic, where they stuck a hole in my back to draw out cerebro-spinal fluid, and the hole has not properly closed.
So what's the solution? Poke my back again, and this time inject some of my own blood which will help close the hole. I'm booked into go to shortly to have this procedure done.
This is really getting to me. I agonized as to whether to just keep resting and hope that the hole closed on its own, or to have another uncomfortable procedure to close it, and decided this morning to take this route. It should give me a little more certaintly that the headache will stop once and for all.
Of course I also have to book in for more IVIg juice, and have decided with my neuro to just do one day (instead of the usual two), and do that on Monday after a weekend of rest.
So what's the solution? Poke my back again, and this time inject some of my own blood which will help close the hole. I'm booked into go to shortly to have this procedure done.
This is really getting to me. I agonized as to whether to just keep resting and hope that the hole closed on its own, or to have another uncomfortable procedure to close it, and decided this morning to take this route. It should give me a little more certaintly that the headache will stop once and for all.
Of course I also have to book in for more IVIg juice, and have decided with my neuro to just do one day (instead of the usual two), and do that on Monday after a weekend of rest.
Wednesday, November 11, 2009
Review with The Man
My last day at Mayo started with the onset of a headache. The little brochure they gave me said that one in three people who have a lumbar puncture experience a headache afterwards. I'm now back in Australia, but was unfortunately unable to leave the headache in the US! It's a dull, throbbing pain, punctuated by bursts of intensity whenever I laugh, cough, or suddenly move my head. What I probably need is some solid R&R time to get over the whole experience.
But back to day 5: I finally get to meet Dr Dyck for a review of all of the test results, and recommendations moving forward. He takes a bit of a history, reviews the documentation, discusses it with the other neurologist present, and confirms the original diagnosis of multifocal motor neuropathy, with conduction blocks in right and left arms. I guess the good news is that there is nothing more insidious there, and I am satisfied that enough diagnosis work has been done to find anything else that could be wrong with me. I explain the side effects that I have experienced, and also show him my hand strength measurement apparatus, and he is suitably impressed. He must be 70-odd, and his finger is able to support over 650g!
As regards dealing with the main condition, he has a few interesting insights. Considering the half-life of IVIg being ten days (contrary to what I've seen online), he is more in favour of smaller doses fortnightly rather than a bigger dose monthly.
There are two schools of thought regarding the use of IVIg for MMN: treat aggressively early on to limit the permanent degradation in hand strength, or delay/limit treatment until the condition gets more severe, because the stuff will eventually stop working. His view is more aligned with the latter: that I should take only as much of the "juice" as is needed to ensure my hand weakness doesn't severely impact my life.
It has been nearly eight weeks since my last juicing, and my hand strength has held up reasonably well - the pain that I was expecting as a result of weakness has not appeared. So I'm thinking that maybe a reduced rate might be in order. He also suggests that it's worth considering different brands of IVIg as they are produced differently, and some may be more effective than others.
He concludes with some general comments about auto-immune disorders: get plenty of sleep (I wish!), eat well, exercise, etc, ... and choose life! He asks me where that phrase comes from, and I recognize it from Deuteronomy (30:19). The quote resonates strongly with me, and I've been thinking since that time about how important my attitude is to all of this. The trip has left me with plenty to consider, as much in terms of treatment as as how to adjust my lifestyle. More once the headache subsides.
But back to day 5: I finally get to meet Dr Dyck for a review of all of the test results, and recommendations moving forward. He takes a bit of a history, reviews the documentation, discusses it with the other neurologist present, and confirms the original diagnosis of multifocal motor neuropathy, with conduction blocks in right and left arms. I guess the good news is that there is nothing more insidious there, and I am satisfied that enough diagnosis work has been done to find anything else that could be wrong with me. I explain the side effects that I have experienced, and also show him my hand strength measurement apparatus, and he is suitably impressed. He must be 70-odd, and his finger is able to support over 650g!
As regards dealing with the main condition, he has a few interesting insights. Considering the half-life of IVIg being ten days (contrary to what I've seen online), he is more in favour of smaller doses fortnightly rather than a bigger dose monthly.
There are two schools of thought regarding the use of IVIg for MMN: treat aggressively early on to limit the permanent degradation in hand strength, or delay/limit treatment until the condition gets more severe, because the stuff will eventually stop working. His view is more aligned with the latter: that I should take only as much of the "juice" as is needed to ensure my hand weakness doesn't severely impact my life.
It has been nearly eight weeks since my last juicing, and my hand strength has held up reasonably well - the pain that I was expecting as a result of weakness has not appeared. So I'm thinking that maybe a reduced rate might be in order. He also suggests that it's worth considering different brands of IVIg as they are produced differently, and some may be more effective than others.
He concludes with some general comments about auto-immune disorders: get plenty of sleep (I wish!), eat well, exercise, etc, ... and choose life! He asks me where that phrase comes from, and I recognize it from Deuteronomy (30:19). The quote resonates strongly with me, and I've been thinking since that time about how important my attitude is to all of this. The trip has left me with plenty to consider, as much in terms of treatment as as how to adjust my lifestyle. More once the headache subsides.
Friday, November 6, 2009
So many tests, so little time
Day 3: Spent a few hours in the morning trying to move one of the tests forward, because it wasn't scheduled until the following week. While they give you a schedule, you are actually able to sit and wait for any of the tests on 'standby'. I am very surprised to find out they get a reasonable number of 'no shows' for appointments. Anyway, they are unable to help me, and eventually they take my mobile number and promise to call if they get an opening.
Later that day is the MRI - the appointment was a "double header", and was meant to go for two hours. After filling in the expansive questionnaire, they take me to get an IV put in because this will include contrast. Now I understand why they are asking me about kidney function as well as the usual questions about metal bits inside my body. Of course I get quesy but the IV goes in easily. Turns out the needle is made of plastic (it has to be, because you can't have any metal bits in the MRI).
Usually, I'm pretty good at lying flat and doing nothing for an extended period. First part is the right arm, and for that I'm lying flat on my back with the arm at my side. You really do lose a sense of time lying in that huge thing. Every now and then they say "this one will be 3 minutes" and off it goes, clicking and whirring and pounding away. Eventually, they slide me out and we do the next set with my left arm wedged up - have done this before and it's quite uncomfortable. Then they push some contrast material in through the IV, and do a few more in that position. Finally, I come out, and go back to lying flat and they do the right arm a few more times now that the contrast material is in. Turns out I was in there for over three hours of this stuff.
Day 4: I had managed to switch my lumbar puncture to Thursday instead of Friday, although when I get there, it turns out I was just switched to standby. So that's what I do, and eventually they call me. They don't do this under x-ray; just in a little treatment room with me lying on my side. It is an unpleasant experience, and along the way the needle nicks a nerve somewhere, and I very briefly feel a sharp pain down one leg. After it's over, I lie flat for a while, so as to let that little hole in my back close.
In between this and my next appointment, I manage to fit in a massage at the local spa. Nice to see there are some people in Rochester who make me feel good!
Later that afternoon is the last one on the list: a sensory test. This is the one I had kept trying to bring forward; must be popular! While I sit there, the operator tests my ability to feel various things: light touch, cold and heat on my nails, hands, and feet. This one is quite innocuous, and goes for about an hour.
Finally, all the tests are complete. All that's left is the review.
Later that day is the MRI - the appointment was a "double header", and was meant to go for two hours. After filling in the expansive questionnaire, they take me to get an IV put in because this will include contrast. Now I understand why they are asking me about kidney function as well as the usual questions about metal bits inside my body. Of course I get quesy but the IV goes in easily. Turns out the needle is made of plastic (it has to be, because you can't have any metal bits in the MRI).
Usually, I'm pretty good at lying flat and doing nothing for an extended period. First part is the right arm, and for that I'm lying flat on my back with the arm at my side. You really do lose a sense of time lying in that huge thing. Every now and then they say "this one will be 3 minutes" and off it goes, clicking and whirring and pounding away. Eventually, they slide me out and we do the next set with my left arm wedged up - have done this before and it's quite uncomfortable. Then they push some contrast material in through the IV, and do a few more in that position. Finally, I come out, and go back to lying flat and they do the right arm a few more times now that the contrast material is in. Turns out I was in there for over three hours of this stuff.
Day 4: I had managed to switch my lumbar puncture to Thursday instead of Friday, although when I get there, it turns out I was just switched to standby. So that's what I do, and eventually they call me. They don't do this under x-ray; just in a little treatment room with me lying on my side. It is an unpleasant experience, and along the way the needle nicks a nerve somewhere, and I very briefly feel a sharp pain down one leg. After it's over, I lie flat for a while, so as to let that little hole in my back close.
In between this and my next appointment, I manage to fit in a massage at the local spa. Nice to see there are some people in Rochester who make me feel good!
Later that afternoon is the last one on the list: a sensory test. This is the one I had kept trying to bring forward; must be popular! While I sit there, the operator tests my ability to feel various things: light touch, cold and heat on my nails, hands, and feet. This one is quite innocuous, and goes for about an hour.
Finally, all the tests are complete. All that's left is the review.
Wednesday, November 4, 2009
Blood, Sweat and Tears
My first stop early on day 1 (we're talking 6:30am) is registration, and then an interview with a neurologist, who takes a comprehensive history, and gives me some rudimentary strength and nerve tests. She goes back to order a series of tests, and eventually they present me with a schedule that will keep me busy for the whole week. I keep asking people when I will get to meet Dr House, and some of them get the joke. No sign of Cutty, or anyone looking even half as hot, which only shows how fictional medical TV series are.
1. Blood
This place is a factory. First stop is specimen collection - I have to collect 24 hours worth of pee, and they give me a generous bottle, as well as an opaque bag to keep it in as I walk around. Because I have had fish on the plane, I have to wait until the next day to start this. Then it's next door for some blood tests: I ask for have it lying down because I'm a queasy woose about these things, and the technician is very sympathetic and does an excellent job in taking eighteen tubes out of me. Man, that's a lot of blood!
Next stop is for a skeletal survey. This department is very busy and all appointments are running late today, and I end up waiting well over an hour to be called. They have a few TVs and computers with internet in the waiting area, which is very handy. Eventually they call me in, and x-ray just about every bone in my body. In the middle, someone comes in to tell me that I'm going to be late for the EMG test scheduled for later that day, and they've shuffled it around to the next day, and prepared a revised schedule. I am overwhelmed by how well-organized this place is.
2. Sweat
From there, I go for an autonomic test - something I've not done before. They put you on a table, attach a bunch of monitors, and test how you sweat during certain activities. This test measures how the nerves work that control blood pressure, heart rate and sweating. This was quite innocuous, and because my EMG was moved to the next day, that was it for me.
The next morning, day 2, I had the thermoregulatory sweat test. Now this one is a doozie. You strip down, lie on a bed, and they cover you with this powder. Then they slide you into this "hot box", which is progressively heated up to 38C (100F) over a period of around 45 minutes, and they monitor how quickly and where you do or don't sweat. The powder changes colour to purple as you sweat. The box is all sealed, but has cameras so they can take pictures of you all (or half) purple covered in only a loin cloth!
After a while (and it's not easy to keep track of how long you've been there), the heat gets quite oppressive. Of course you have to lie completely still through all of this, and listen to the muzak they have playing. It was like being trapped in a lift on a hot day with the air conditioning broken down. Eventually, the operator offered to change the music selection - in addition to both kinds of music (country and western), they had some Sheryl Crow, which was the best of what was on offer.
3. Tears
Next test for that day was the big one - EMG. They do a nerve conduction study first. That part consisted of sticking electrodes to my arms, zapping me with electric shocks at various points, and measuring how much I flinched (sort of). Last time this was done, they found conduction blocks in both arms, which is what gave rise to the diagnosis of multifocal motor neuropathy in the first place. Some of the electric shocks are pretty full-on. I've never been shot, but I imagine that's what it might feel like - a very sharp, intense and localized pain at various points on my arms and legs.
The whole thing was being observed by a visiting neurologist from Switzerland. He seemed like a nice enough fellow, and I didn't have a problem with another person watching my pain.
The second part - the EMG - was done by the neurologist. This involved sticking needles into various muscles, and "listening" for the electrical signals going through as the muscles are activated. So, say, with the needle in my hand, he would push down on a finger, and ak me to push upward. The pain is nothing short of excruciating, particularly in a few spots around the fleshy part of the hands below the thumb. After a few on the left side, I started shaking and teeth chattering. He then moved to my leg, and finally did just one on my right arm before deciding it was enough.
After it was over and they all left the room, I broke down in tears. I just felt so awful. Perhaps it was the pain, perhaps that I was holding it in (to the extent that I could) during the test itself, or perhaps I just needed to open the emotional floodgates through this whole process, and that was an opportune time. Eventually, I composed myself, and fortunately that was it for day 2. Back to the room to rest and relax.
1. Blood
This place is a factory. First stop is specimen collection - I have to collect 24 hours worth of pee, and they give me a generous bottle, as well as an opaque bag to keep it in as I walk around. Because I have had fish on the plane, I have to wait until the next day to start this. Then it's next door for some blood tests: I ask for have it lying down because I'm a queasy woose about these things, and the technician is very sympathetic and does an excellent job in taking eighteen tubes out of me. Man, that's a lot of blood!
Next stop is for a skeletal survey. This department is very busy and all appointments are running late today, and I end up waiting well over an hour to be called. They have a few TVs and computers with internet in the waiting area, which is very handy. Eventually they call me in, and x-ray just about every bone in my body. In the middle, someone comes in to tell me that I'm going to be late for the EMG test scheduled for later that day, and they've shuffled it around to the next day, and prepared a revised schedule. I am overwhelmed by how well-organized this place is.
2. Sweat
From there, I go for an autonomic test - something I've not done before. They put you on a table, attach a bunch of monitors, and test how you sweat during certain activities. This test measures how the nerves work that control blood pressure, heart rate and sweating. This was quite innocuous, and because my EMG was moved to the next day, that was it for me.
The next morning, day 2, I had the thermoregulatory sweat test. Now this one is a doozie. You strip down, lie on a bed, and they cover you with this powder. Then they slide you into this "hot box", which is progressively heated up to 38C (100F) over a period of around 45 minutes, and they monitor how quickly and where you do or don't sweat. The powder changes colour to purple as you sweat. The box is all sealed, but has cameras so they can take pictures of you all (or half) purple covered in only a loin cloth!
After a while (and it's not easy to keep track of how long you've been there), the heat gets quite oppressive. Of course you have to lie completely still through all of this, and listen to the muzak they have playing. It was like being trapped in a lift on a hot day with the air conditioning broken down. Eventually, the operator offered to change the music selection - in addition to both kinds of music (country and western), they had some Sheryl Crow, which was the best of what was on offer.
3. Tears
Next test for that day was the big one - EMG. They do a nerve conduction study first. That part consisted of sticking electrodes to my arms, zapping me with electric shocks at various points, and measuring how much I flinched (sort of). Last time this was done, they found conduction blocks in both arms, which is what gave rise to the diagnosis of multifocal motor neuropathy in the first place. Some of the electric shocks are pretty full-on. I've never been shot, but I imagine that's what it might feel like - a very sharp, intense and localized pain at various points on my arms and legs.
The whole thing was being observed by a visiting neurologist from Switzerland. He seemed like a nice enough fellow, and I didn't have a problem with another person watching my pain.
The second part - the EMG - was done by the neurologist. This involved sticking needles into various muscles, and "listening" for the electrical signals going through as the muscles are activated. So, say, with the needle in my hand, he would push down on a finger, and ak me to push upward. The pain is nothing short of excruciating, particularly in a few spots around the fleshy part of the hands below the thumb. After a few on the left side, I started shaking and teeth chattering. He then moved to my leg, and finally did just one on my right arm before deciding it was enough.
After it was over and they all left the room, I broke down in tears. I just felt so awful. Perhaps it was the pain, perhaps that I was holding it in (to the extent that I could) during the test itself, or perhaps I just needed to open the emotional floodgates through this whole process, and that was an opportune time. Eventually, I composed myself, and fortunately that was it for day 2. Back to the room to rest and relax.
Tuesday, November 3, 2009
Welcome to Rochester
Rochester is a long trip for me. First, across the Pacific to from Australia to Los Angeles, then to Chicago. Chicago airport is huge, and a long walk in a hurry from one section to another - having come in on a "regular" 737, but the short trip from Chicago to Rochester is on American Eagle, who fly these little 50-odd seater commuter planes to and from small towns all over the USA.
I can tell very quickly that I'm in the midwest: the flight attendant is fiftysomething, with big blond hair, and a smile that would need to be surgically removed. She's from "round these parts", and is based in Chicago and does these little flights back and forth all day. Someone once told me - always be concerned about a veteran private (in the army): if they were any good, then by that age they would either be a general, or dead!
For a small regional airport, it takes quite a while to get my luggage. The shuttle bus takes a bunch of us around the local hotels, and the driver has an old-fashioned courtesy that's refreshing. My hotel is one of several connected via a superb subway system to all of the Mayo clinic and associated hospitals.
I can tell very quickly that I'm in the midwest: the flight attendant is fiftysomething, with big blond hair, and a smile that would need to be surgically removed. She's from "round these parts", and is based in Chicago and does these little flights back and forth all day. Someone once told me - always be concerned about a veteran private (in the army): if they were any good, then by that age they would either be a general, or dead!
For a small regional airport, it takes quite a while to get my luggage. The shuttle bus takes a bunch of us around the local hotels, and the driver has an old-fashioned courtesy that's refreshing. My hotel is one of several connected via a superb subway system to all of the Mayo clinic and associated hospitals.
Saturday, October 24, 2009
Mayo on my mind
Leaving for an assessment at the Mayo clinic in a week, and needless to say it's been on my mind a fair bit. I have no idea what to expect of the process, let alone the outcome. House used to be one of my favourite shows, but lately I cringe at all the poking and prodding (mostly the poking), and now wonder if I am about to become the "special guest star" on an episode.
I didn't have my scheduled treatment a week ago as suggested by the doctor at the Mayo. Definitely didn't miss the experience! The finger strength hasn't degraded quite too badly, which is good.
A few weeks ago, a couple of fingers on my right hand felt sore and slightly inflamed. It felt muscular, but I didn't hurt them, and I have no idea where it came from. It could be anything, but of course my first thought is that it is a new symptom. My neuro acknowledged that there is slight inflammation, but said it isn't necessarily linked. In the meantime, the symptom remains, and hasn't gotten better or worse.
I didn't have my scheduled treatment a week ago as suggested by the doctor at the Mayo. Definitely didn't miss the experience! The finger strength hasn't degraded quite too badly, which is good.
A few weeks ago, a couple of fingers on my right hand felt sore and slightly inflamed. It felt muscular, but I didn't hurt them, and I have no idea where it came from. It could be anything, but of course my first thought is that it is a new symptom. My neuro acknowledged that there is slight inflammation, but said it isn't necessarily linked. In the meantime, the symptom remains, and hasn't gotten better or worse.
Sunday, September 27, 2009
Reflecting on a New Year
Having celebrated Jewish New Year last week, and on the eve of the holiest day in the Jewish calendar, Yom Kippur, I have been relfecting on the last twelve months in my life in the context of my condition. I read somewhere, that someone was asked: "how did your Jewish New Year go?", and he replied: "I'll tell you at the end of the year". We hope and pray for a good year, and that we be inscribed and sealed in the "good book", however the only test of this is time.
On that basis, my Jewish New Year of 2008 didn't go particularly well. Twelve months ago, I could not have imagined myself at this point. My life at present is burdened with uncertainty about the future, regarding my medical condition and several other major issues. The emotions are sitting at the surface just about to burst forth in uncontrollable tears (and they do, every now and then). They need an outlet, and this is a great time of year for that. Hopefully I can look back in another twelve months at a more positive year on all fronts!
I've started planning my trip to the Mayo in November. The doctor has recommended that I stay off the IVIg juice so he can see me without its influence. That means I will be without it for about eight weeks instead of the usual four. The thought of that doesn't make me feel very excited. On the other hand, I want this process to uncover some new insights, so I have to give it every chance of that.
On that basis, my Jewish New Year of 2008 didn't go particularly well. Twelve months ago, I could not have imagined myself at this point. My life at present is burdened with uncertainty about the future, regarding my medical condition and several other major issues. The emotions are sitting at the surface just about to burst forth in uncontrollable tears (and they do, every now and then). They need an outlet, and this is a great time of year for that. Hopefully I can look back in another twelve months at a more positive year on all fronts!
I've started planning my trip to the Mayo in November. The doctor has recommended that I stay off the IVIg juice so he can see me without its influence. That means I will be without it for about eight weeks instead of the usual four. The thought of that doesn't make me feel very excited. On the other hand, I want this process to uncover some new insights, so I have to give it every chance of that.
Monday, August 17, 2009
too much juice?
Well, so far, this latest experiment with my medication hasn't been a roaring success. On the first day, the neck soreness was quite severe, accompanied by a sensitivity to light, and that general awfulness feeling (my wife says "you look green"). Fortunately, not much in the way of a headache. On the second day, it wasn't quite as bad. I had the weekend to rest and take it easy, although this morning I woke up with an awful headache. This was probably because of the howling winds that didn't allow me to get the decent night's sleep that I need.
It's quite evident that the juice and I just don't get on well. What I can't stand is that the nasty side effects are very quick to show up, but the positive effects of the treatment usually don't kick in for about a week. That makes me very despondent every time I go in for some juicing. Especially when I wake up in the morning feeling like crap and read puff pieces in the newspaper about little Michael and how IVIg revs him up just like a double espresso. I wish the stuff worked as well for me!
Wednesday, August 12, 2009
even more juice
Blogger has been playing up lately - very annoying!
I've been tracking my hand strength for the last few months, using a "rig" consisting of a paper cup with some string attached, and a series of scientific weights. A couple of times a week, I measure how much weight each of my fingers can hold up. As you can see from the pretty picture, there are spikes, and these roughly coincide with the IVIg treatments - they seem to have their maximum effect around a week after each treatment.
The legend is a little small - the blue line at the bottom is my right index finger. There are a few interesting things going on here. Firstly, despite the treatment, the best it gets is for my right finger to have not much more than 20% (compared to the left, and the other fingers). I have found this quite disappointing. The spikes are also quite modest. Finally, the pinkie (black) is one of the stronger fingers, and this is uncommon in MMN.
So given that we are reasonably on top of the side effects, my neuro has decided to up the juice. We had been doing 0.78 g/Kg over two days as a maintenance dose, which is already at the high end. The next dose (over the next two days) will be 1.06 g/Kg - an increase of 36% or an extra hour and twenty minutes connected to the juice machine (can you tell I'm a numbers guy?).
I really shouldn't have written about this - all it's done is make me think about how long the treatment is and what I will do. Lately, I've been relaxing more during the infusions - nodding off for a nap here and there because of the phenergan. All of that certainly seems to have helped minimize the side effects. Will have to line up some extra videos to watch or maybe a book (although reading one-handed while lying in a bed is a little difficult).
And in other news, Mayo have responded in the affirmative, and I'm booked in for November. More about that in another post.
I've been tracking my hand strength for the last few months, using a "rig" consisting of a paper cup with some string attached, and a series of scientific weights. A couple of times a week, I measure how much weight each of my fingers can hold up. As you can see from the pretty picture, there are spikes, and these roughly coincide with the IVIg treatments - they seem to have their maximum effect around a week after each treatment.
The legend is a little small - the blue line at the bottom is my right index finger. There are a few interesting things going on here. Firstly, despite the treatment, the best it gets is for my right finger to have not much more than 20% (compared to the left, and the other fingers). I have found this quite disappointing. The spikes are also quite modest. Finally, the pinkie (black) is one of the stronger fingers, and this is uncommon in MMN.
So given that we are reasonably on top of the side effects, my neuro has decided to up the juice. We had been doing 0.78 g/Kg over two days as a maintenance dose, which is already at the high end. The next dose (over the next two days) will be 1.06 g/Kg - an increase of 36% or an extra hour and twenty minutes connected to the juice machine (can you tell I'm a numbers guy?).
I really shouldn't have written about this - all it's done is make me think about how long the treatment is and what I will do. Lately, I've been relaxing more during the infusions - nodding off for a nap here and there because of the phenergan. All of that certainly seems to have helped minimize the side effects. Will have to line up some extra videos to watch or maybe a book (although reading one-handed while lying in a bed is a little difficult).
And in other news, Mayo have responded in the affirmative, and I'm booked in for November. More about that in another post.
Tuesday, July 14, 2009
next steps
Well, it's been business as usual with the IVIg treatments, and the side effects are more manageable now that I take it easy for a few days each time. Will put up a graph of the results so far in a future post.
However, there is a new development. On a recent overseas trip, I consulted a world expert in diagnosis and specialist referrals. He is not a doctor; rather someone who is renowned for referring people to the right specialist for their specific condition or symptoms. After reviewing my case, he suggested I get in touch with Dr Dyck from the Mayo Clinic, and spoke highly of their diagnostic methodology. This made me wonder if his view was that my diagnosis was incorrect.
Then, I consulted with a spiritual healer. Her advice was that my illness is a lot worse than what we think, and that I should see a doctor in the USA for treatment. Between that and a few other uncanny comments about other matters, I am now very spooked. I'm not an overly superstitous person, however I feel strongly that there are people in the world who have vision/insights to see things that others don't. So my next step is to get in touch with the Mayo and organize something.
However, there is a new development. On a recent overseas trip, I consulted a world expert in diagnosis and specialist referrals. He is not a doctor; rather someone who is renowned for referring people to the right specialist for their specific condition or symptoms. After reviewing my case, he suggested I get in touch with Dr Dyck from the Mayo Clinic, and spoke highly of their diagnostic methodology. This made me wonder if his view was that my diagnosis was incorrect.
Then, I consulted with a spiritual healer. Her advice was that my illness is a lot worse than what we think, and that I should see a doctor in the USA for treatment. Between that and a few other uncanny comments about other matters, I am now very spooked. I'm not an overly superstitous person, however I feel strongly that there are people in the world who have vision/insights to see things that others don't. So my next step is to get in touch with the Mayo and organize something.
Monday, June 8, 2009
Rest is the key
It's been a couple of treatments since my last posting, and things appear to be on the up. I have formed the view that while steroids reduce side effects, they have an adverse effect on the primary condition itself. Having put in a measurement system for the strength in my fingers, I was very disappointed by the improvement in course I had five weeks ago.
So in this last one, we just used anti-histamines (phenergan), anti-inflammatories (nurofen), and regular pain killers (panadol), and these did a reasonable job of reducing the side effects. The most important thing I have learnt from the last two treatment courses is the value of rest! On each occassion I just went to bed and relaxed for 2-3 days, and that was more effective than any drug.
Of course, I would much rather pop a pill (or ten) than have to take 2-3 days off each month. But alas, it is now clear to me that lifestyle changes are required, and one is just to take it easy, and reduce the pace of my life; particular around treatment time.
This last treatment was after a gap of just one month, and the strength in my index finger is the best it has been for around six weeks. That part is very encouraging. Because of some travel plans, my next treatment will be after just a three-week gap, so I'm hoping that will act as an extra booster, and I can revert to a monthly schedule that is more pro-active with respect to the strength in my fingers.
I'm also now exploring some complementary medicine as a way of dealing with some of the limitations of western medicine, particularly relating to the side effects if IVIg. More to follow in future posts ...
So in this last one, we just used anti-histamines (phenergan), anti-inflammatories (nurofen), and regular pain killers (panadol), and these did a reasonable job of reducing the side effects. The most important thing I have learnt from the last two treatment courses is the value of rest! On each occassion I just went to bed and relaxed for 2-3 days, and that was more effective than any drug.
Of course, I would much rather pop a pill (or ten) than have to take 2-3 days off each month. But alas, it is now clear to me that lifestyle changes are required, and one is just to take it easy, and reduce the pace of my life; particular around treatment time.
This last treatment was after a gap of just one month, and the strength in my index finger is the best it has been for around six weeks. That part is very encouraging. Because of some travel plans, my next treatment will be after just a three-week gap, so I'm hoping that will act as an extra booster, and I can revert to a monthly schedule that is more pro-active with respect to the strength in my fingers.
I'm also now exploring some complementary medicine as a way of dealing with some of the limitations of western medicine, particularly relating to the side effects if IVIg. More to follow in future posts ...
Tuesday, May 5, 2009
Heading for the third round
I guess thinking that I was on a two-month treatment cycle was just me being the eternal optimist. Maybe that is why I get these waves of melancholy and angst? It happens when I actually schedule my next treatment course. Or when I suddenly start to feel pain doing an everyday activity, like pulling off a t-shirt. Perhaps these events trigger a challenge to my natural state of optimism about everything, and that in turn causes me to think about some of the negative aspects of my life with MMN. Or perhaps I am just still learning to accept my condition, and what I really need is to adjust my expectations.
So later this week it will be another two days of juice, after a break of 5 weeks since the last treatment. This is more typical of the treatment cycle for most people with this disorder. The hospital has a new guy in charge of the unit, and I'm told he's really good with putting in IVs. We are making some adjustments to the regimen - a different premedication that should hopefully reduce or eliminate the side effects, and slowing the infusion rate so each batch goes for five hours instead of three. Will have to stock up on DVDs, but the real challenge for me will be to actually get up with the IV in my arm, walk over to the bathroom and relieve myself at some point during the infusion. I managed to do that last time without even looking at the IV site - quite an achievement!
In the meantime, my "rig" (a al Mythbusters) is all set up. It consists of a plastic basket, some ribbon, and a series of weights (the weights were originally little bags of dirt, but I've gone all out and purchased some a calibration weight set). This allows me to regularly measure the strength in my hand (actually, each finger) and record it. Creating a spreadsheet and a pretty graph of the strength measures over time, and how they are impacted by the IVIg treatment is actually something I really enjoy, being a very analytical person.
This will be my third treatment, but there is not much point keeping count. Shortly, it will just become a contiuum, like monthly board meetings or business trips. Discussed the situation with my father today, and explained to him yet again that there is no known cure and that the treatment is ongoing. What I really need right now is a good cry. The emotions are welling up just beneath the surface, and I need to share them with someone who can understand.
So later this week it will be another two days of juice, after a break of 5 weeks since the last treatment. This is more typical of the treatment cycle for most people with this disorder. The hospital has a new guy in charge of the unit, and I'm told he's really good with putting in IVs. We are making some adjustments to the regimen - a different premedication that should hopefully reduce or eliminate the side effects, and slowing the infusion rate so each batch goes for five hours instead of three. Will have to stock up on DVDs, but the real challenge for me will be to actually get up with the IV in my arm, walk over to the bathroom and relieve myself at some point during the infusion. I managed to do that last time without even looking at the IV site - quite an achievement!
In the meantime, my "rig" (a al Mythbusters) is all set up. It consists of a plastic basket, some ribbon, and a series of weights (the weights were originally little bags of dirt, but I've gone all out and purchased some a calibration weight set). This allows me to regularly measure the strength in my hand (actually, each finger) and record it. Creating a spreadsheet and a pretty graph of the strength measures over time, and how they are impacted by the IVIg treatment is actually something I really enjoy, being a very analytical person.
This will be my third treatment, but there is not much point keeping count. Shortly, it will just become a contiuum, like monthly board meetings or business trips. Discussed the situation with my father today, and explained to him yet again that there is no known cure and that the treatment is ongoing. What I really need right now is a good cry. The emotions are welling up just beneath the surface, and I need to share them with someone who can understand.
Saturday, April 11, 2009
rock and hard place
Rock (noun): Deal with the side effects of IVIg using conventional, over-the-counter anti-inflammatories and pain medication, and just wait until they subside.
Hard Place (noun): Deal with the side effects of Prednisone, which rendered me angry, aggressive, hormonal, and bursting out of my skin.
After taking the Prednisone for two weeks, and been off it now for a few days, I've gained a deeper understanding about the nature of different types of headaches. Now that its effects have worn off, I can see Prednisone is reasonably effective in reducing the inflammation reaction to IVIg. Yes, the headaches and neck soreness have returned, so it's back to Nurofen etc to deal with that. Drugs like Excedrin don't work - there is pain, and there is pain. Because mine arises from inflammation, your typical pain killers (even strong ones) don't really do the job.
Being trapped like this between two sets of side effects has me in a bit of a down mood. Maybe I should take something for that?
Hard Place (noun): Deal with the side effects of Prednisone, which rendered me angry, aggressive, hormonal, and bursting out of my skin.
After taking the Prednisone for two weeks, and been off it now for a few days, I've gained a deeper understanding about the nature of different types of headaches. Now that its effects have worn off, I can see Prednisone is reasonably effective in reducing the inflammation reaction to IVIg. Yes, the headaches and neck soreness have returned, so it's back to Nurofen etc to deal with that. Drugs like Excedrin don't work - there is pain, and there is pain. Because mine arises from inflammation, your typical pain killers (even strong ones) don't really do the job.
Being trapped like this between two sets of side effects has me in a bit of a down mood. Maybe I should take something for that?
Tuesday, April 7, 2009
'roid rage?
I really hate Prednisone. I'm finally tapering for a bit longer after being on it for just over a week at 25mg, and this time, it's really messing with me. Hard to put words on it ... I'm "edgy", not tired at night, sort-of anxious, peckish. Have put on 4-5kg in just a few days, which has made me feel bloated. Is this 'roid rage?
Whatever it is, I can't stand it. It's making me something I don't like, and I can't wait for these side effects to fade away.
It's strange that I don't recall these side effects last time I took Prednisone. This time, we did it as a premedication before the IVIg, so the circumstances and the combination of things going on in my body are a bit different. They have helped to alleviate some of the IVIg side effects, but it has been a very unpleasant journey. In addition, the Prednisone does seem to have a negative effect on my hand strength, so the benefits of the IVIg are held back somewhat. This is something that also happened in my last treatment cycle.
The good news is that my consulting neurologist from Johns Hopkins suggested something different next time. The thought of having to fiddle with doses of Prednisone each time was really depressing me. Instead, he's suggested an IV cocktail of dexamethasone plus a couple of other "mixers" as a one-shot premedication. It's a much stronger form of steroid, and because it's a short, sharp dose, the side effects should be reduced. Anyway, something else to look forward to in a couple of months ...
Whatever it is, I can't stand it. It's making me something I don't like, and I can't wait for these side effects to fade away.
It's strange that I don't recall these side effects last time I took Prednisone. This time, we did it as a premedication before the IVIg, so the circumstances and the combination of things going on in my body are a bit different. They have helped to alleviate some of the IVIg side effects, but it has been a very unpleasant journey. In addition, the Prednisone does seem to have a negative effect on my hand strength, so the benefits of the IVIg are held back somewhat. This is something that also happened in my last treatment cycle.
The good news is that my consulting neurologist from Johns Hopkins suggested something different next time. The thought of having to fiddle with doses of Prednisone each time was really depressing me. Instead, he's suggested an IV cocktail of dexamethasone plus a couple of other "mixers" as a one-shot premedication. It's a much stronger form of steroid, and because it's a short, sharp dose, the side effects should be reduced. Anyway, something else to look forward to in a couple of months ...
Wednesday, April 1, 2009
juicing again
Walked in this morning for the third and final day of this course of IVIg, and Michelle (Jamie has left the position, so Michelle is running the "juice bar" while they find a replacement) greets me with a friendly "How are you?"
"It's fantastic! I woke up this morning with full strength in my hand, and the side effects had all just vanished .... APRIL FOOLS!" Maybe it was funny at the time. Maybe you just had to be there.
I should hardly be surprised. The side effects started showing up an hour or so after the first day of juicing, and have steadily increased. Hard to tell if they are slightly less severe than last time as a result of the premedication with Prednisone - I think it has helped a bit. Will be watching it closely over the next few days as I continue with the Prednisone (plus regular pain medication), and then taper off for a few days. On the bright side, there is a slight improvement in hand strength, and it isn't collapsing under any pressure the way it was a few days ago.
So having established that the juice does help (just that it doesn't quite get on with me), this now turns into a trial-and-error exercise in working out how to manage the side effects: headaches, neck soreness, sensitivity to light and loud noises (like kids crying and shouting). It looks like a mild case of aseptic meningitis (which is what they suspected the first time around), which is usually treated with: steroids! So for each juicing, we will attempt to tune the Prednisone dose to one that works, and hope that other things remain stable for a period of time.
Of course things would be boring if the Prednisone didn't have its own side effects: a touch of nausea, sleeplessness (although I felt quite tired this afternoon), edginess (but who wouldn't be in my condition?) I'm thinking the best thing to do is head off to a spa for a few days of R&R after each juicing. Do you think I can get a prescription for that?
"It's fantastic! I woke up this morning with full strength in my hand, and the side effects had all just vanished .... APRIL FOOLS!" Maybe it was funny at the time. Maybe you just had to be there.
I should hardly be surprised. The side effects started showing up an hour or so after the first day of juicing, and have steadily increased. Hard to tell if they are slightly less severe than last time as a result of the premedication with Prednisone - I think it has helped a bit. Will be watching it closely over the next few days as I continue with the Prednisone (plus regular pain medication), and then taper off for a few days. On the bright side, there is a slight improvement in hand strength, and it isn't collapsing under any pressure the way it was a few days ago.
So having established that the juice does help (just that it doesn't quite get on with me), this now turns into a trial-and-error exercise in working out how to manage the side effects: headaches, neck soreness, sensitivity to light and loud noises (like kids crying and shouting). It looks like a mild case of aseptic meningitis (which is what they suspected the first time around), which is usually treated with: steroids! So for each juicing, we will attempt to tune the Prednisone dose to one that works, and hope that other things remain stable for a period of time.
Of course things would be boring if the Prednisone didn't have its own side effects: a touch of nausea, sleeplessness (although I felt quite tired this afternoon), edginess (but who wouldn't be in my condition?) I'm thinking the best thing to do is head off to a spa for a few days of R&R after each juicing. Do you think I can get a prescription for that?
Sunday, March 29, 2009
miscalculation
It seems that with all the extra tests I was having, I took my eye off the main game, and overshot the timing for my second treatment. With my 20:20 hindsight glasses, I probably should've done it several weeks ago. In the meantime, my hand strength has deteriorated quite rapidly in the last two weeks, and is now quite severe. Part of the delay was me not wanting to accept the notion of needing regular treatment; I have to deal with that.
The neurologists say that pain is not something that is associated with MMN. Of course, by this they mean that a nerve conduction block will not cause pain. They may be right about this. However, many people with the condition do experience pain, and I think the reason is quite simple. If your hand does not have strength to support movement in certain directions, and you actually do move it or pur pressure in those areas, then the hand collapses. The radial nerve doesn't seem to be that important when it comes to hand movement - I would think gripping (which is the median nerve) was a far more common action that needed support of motor nerves. But surprise, surprise, there are many movements where my hand and wrist collapse in pain - pulling off a t-shirt, turning a steering wheel, shaking hands, ...
Every time I see my neurologist, or discuss it with my pilates instructor (who is also a physiotherapist), I learn so much about the nervous system and biomechanics. While I'm a person who thirsts for knowledge, and people are impressed when I can explain this stuff to them in simple terms, in the back of my mind, I'm thinking "do I really need to know this?"
Anyway, I've started the premedication before the next treatment tomorrow. Hopefully, I will not experience the side effects of last time. This course is just three days, so that might also reduce the chance of side effects. I really need it to work - having my hand like this just isn't doing it for me.
The neurologists say that pain is not something that is associated with MMN. Of course, by this they mean that a nerve conduction block will not cause pain. They may be right about this. However, many people with the condition do experience pain, and I think the reason is quite simple. If your hand does not have strength to support movement in certain directions, and you actually do move it or pur pressure in those areas, then the hand collapses. The radial nerve doesn't seem to be that important when it comes to hand movement - I would think gripping (which is the median nerve) was a far more common action that needed support of motor nerves. But surprise, surprise, there are many movements where my hand and wrist collapse in pain - pulling off a t-shirt, turning a steering wheel, shaking hands, ...
Every time I see my neurologist, or discuss it with my pilates instructor (who is also a physiotherapist), I learn so much about the nervous system and biomechanics. While I'm a person who thirsts for knowledge, and people are impressed when I can explain this stuff to them in simple terms, in the back of my mind, I'm thinking "do I really need to know this?"
Anyway, I've started the premedication before the next treatment tomorrow. Hopefully, I will not experience the side effects of last time. This course is just three days, so that might also reduce the chance of side effects. I really need it to work - having my hand like this just isn't doing it for me.
Friday, March 20, 2009
next juice ...
My hand strength has degraded a fair bit in the last week, and with the protracted diagnosis phase all but complete (just a review discussion with my neurologist next week), I decided that it was finally time for my second IVIg treatment. I ought to be pleased because it has been three months since the first one, which indicates a very slow progression, but instead I'm feeling flat and depressed about it.
Approaching a second treatment course is very different from the first. While I am unable to get excited or enthusiastic about any medical procedure involving a close relationship with a needle, at least with the first treatment, I anticipated a successful outcome, and was not particularly concerned about side effects.
This time around, my anticipation is very different. I think the treatment will result in improvement to my hand strength, but the side effects are a concern, mostly because there hasn't been a satisfactory explanation as to why the headaches went on so long. This time, I am going to premedicate with Prednisone, which should help, but as always, the operative word is "should".
But the other thing that weighs down on me is the long-term future. By embarking on this a second time, I'm accepting it as a part of my life - that regular IVIg "juicings" will now be established as a regular part of my diary. While I was already advised that there is no cure, and that this is just about the only treatment, this is the moment when its permanence is truly felt.
Approaching a second treatment course is very different from the first. While I am unable to get excited or enthusiastic about any medical procedure involving a close relationship with a needle, at least with the first treatment, I anticipated a successful outcome, and was not particularly concerned about side effects.
This time around, my anticipation is very different. I think the treatment will result in improvement to my hand strength, but the side effects are a concern, mostly because there hasn't been a satisfactory explanation as to why the headaches went on so long. This time, I am going to premedicate with Prednisone, which should help, but as always, the operative word is "should".
But the other thing that weighs down on me is the long-term future. By embarking on this a second time, I'm accepting it as a part of my life - that regular IVIg "juicings" will now be established as a regular part of my diary. While I was already advised that there is no cure, and that this is just about the only treatment, this is the moment when its permanence is truly felt.
Friday, March 6, 2009
next juice?
Well, the most recent set of test results (skeletal x-ray and MRI) are in, and everything does seem to point to MMN. Is this a good thing? Hard to tell. They're ruled out plenty of bad things, and it looks far more like MMN than CIDP. I don't know if one is better or worse than the other, so that doesn't mean a lot.
It's been over a week since I finished the Prednisone, and I have noticed a couple of interesting things. Since finishing, my hands seem to feel a bit better - a bit more freedom of movement. That seems to indicate that the Prednisone had a detrimental effect. However, along with that, the headaches have returned. They are far less intense than a couple of months ago when I had the IVIg treatment, but they are still there. Not severe enough for me for me to be taking something every day, but enough that (a) I notice, and (b) there is no answer as to why they are still there. Perhaps they are less severe because the IVIg is wearing off over time?
So now I play the waiting game. Waiting for my hands to weaken sufficiently that I will embark on the next IVIg juicing. Next time, they will premedicate me with Prednisone, which they think might help with the headaches. No-one really knows; it's a case of trial and error. More and more I feel like I'm the patient on an episode of House. The only differences are that over there in TV-land, he works it out in about 35 minutes, it's all over in 42 minutes, and the total elapsed time is a few days. My episode will being played out over years, and in that context, we've only just begun. In fact, all these medical shows are starting to annoy me. I squirm when they do tests on the patients, especially the ones with needles, and I'm starting to understand far more of the medical terms than the typical viewer.
Perhaps the only good news is that it's been some ten weeks since my first IVIg treatment, and my hands are far better than they were before the treatment. To me, that implies a longer than average cycle between treatments. You might notice that I'm not running back for more in a hurry. It's a fine-tuned balance between a rock and a hard place.
It's been over a week since I finished the Prednisone, and I have noticed a couple of interesting things. Since finishing, my hands seem to feel a bit better - a bit more freedom of movement. That seems to indicate that the Prednisone had a detrimental effect. However, along with that, the headaches have returned. They are far less intense than a couple of months ago when I had the IVIg treatment, but they are still there. Not severe enough for me for me to be taking something every day, but enough that (a) I notice, and (b) there is no answer as to why they are still there. Perhaps they are less severe because the IVIg is wearing off over time?
So now I play the waiting game. Waiting for my hands to weaken sufficiently that I will embark on the next IVIg juicing. Next time, they will premedicate me with Prednisone, which they think might help with the headaches. No-one really knows; it's a case of trial and error. More and more I feel like I'm the patient on an episode of House. The only differences are that over there in TV-land, he works it out in about 35 minutes, it's all over in 42 minutes, and the total elapsed time is a few days. My episode will being played out over years, and in that context, we've only just begun. In fact, all these medical shows are starting to annoy me. I squirm when they do tests on the patients, especially the ones with needles, and I'm starting to understand far more of the medical terms than the typical viewer.
Perhaps the only good news is that it's been some ten weeks since my first IVIg treatment, and my hands are far better than they were before the treatment. To me, that implies a longer than average cycle between treatments. You might notice that I'm not running back for more in a hurry. It's a fine-tuned balance between a rock and a hard place.
Tuesday, February 24, 2009
on pain and memory
Chronic pain, and muscle soreness or weakness, is a funny thing. When it's there, you know it. You notice it all the time. Whether it can be medicated or not, it's there in the front of your mind. The fact that it's chronic bears down on the mind as well, and compounds the effect. Unlike a sports injury or the occassional headache, knowing that this is something long term with no end in sight magnifies the feeling with an additional, psychological burden.
Then, if a course of treatment is successful, the symptom may just fade. And when it fades, it's almost as if it was never there. When it's absent, it was really hard to remember what the pain or weakness was like when you had it. You quickly rebound to a state of how things ought to be as if that is how it always was, and there was never anything wrong.
But after a while, the effect of the treatment may start to wear off. The weakness or pain emerges from its dormancy quite quickly, in fact much faster than its original appearance, which was a slow progression over perhaps several years. It announces to the body: "I'm baaa-aack", like a long lost friend who was never lost at all; just travelling briefly. And then you realize that the weakness and pain was never gone at all, and that the time you enjoyed when it was absent was the exception, rather than the norm - just a short dream.
This is where I am at now. After nearly two weeks on the course of Prednisone (which is now finished), and nearly two months since my initial IVIG treatment, the hand weakness reappeared almost overnight and pain a few days later. There is also some feeling of weakness in my left hand, which I've been trying to find words to describe, and of course the cramps in my calves (although I think lots of stretching helps for that).
But now, I am in no-man's land. I'm not going to have another "juicing" with IVIG because we're not sure how to deal with the side effects. But if I do nothing, then the hand weakness will just stay and get worse. Am waiting on some more test results. These might shed some light on the whole MMN vs CIDP thing, which might change the preferred treatment. The only certainty for me is what happens if I do nothing.
Then, if a course of treatment is successful, the symptom may just fade. And when it fades, it's almost as if it was never there. When it's absent, it was really hard to remember what the pain or weakness was like when you had it. You quickly rebound to a state of how things ought to be as if that is how it always was, and there was never anything wrong.
But after a while, the effect of the treatment may start to wear off. The weakness or pain emerges from its dormancy quite quickly, in fact much faster than its original appearance, which was a slow progression over perhaps several years. It announces to the body: "I'm baaa-aack", like a long lost friend who was never lost at all; just travelling briefly. And then you realize that the weakness and pain was never gone at all, and that the time you enjoyed when it was absent was the exception, rather than the norm - just a short dream.
This is where I am at now. After nearly two weeks on the course of Prednisone (which is now finished), and nearly two months since my initial IVIG treatment, the hand weakness reappeared almost overnight and pain a few days later. There is also some feeling of weakness in my left hand, which I've been trying to find words to describe, and of course the cramps in my calves (although I think lots of stretching helps for that).
But now, I am in no-man's land. I'm not going to have another "juicing" with IVIG because we're not sure how to deal with the side effects. But if I do nothing, then the hand weakness will just stay and get worse. Am waiting on some more test results. These might shed some light on the whole MMN vs CIDP thing, which might change the preferred treatment. The only certainty for me is what happens if I do nothing.
Thursday, February 12, 2009
'roids forward and backward
Have been on the 'roids (that's steroids, as in Prednisone) for a week now, and they do seem to have had an effect. The headaches have subsided, which is good. The main thing I've been watching for are further possible side effects. Sometimes I wonder what proportion of drugs are taken to avoid side effects of other drugs, and how much goes to treat the primary condition.
Still have some more tests next week that might shed some further light on exactly what thing I have. In the meantime, it's a case of "let's try this and see what happens".
In the meantime, I've noticed in the last day that my right finger has reverted a little, and there is less movement. It seems a bit different to what it was a few months ago before any treatment. My wife thinks I'm really good at describing pain and physical sensations. This feels a little different to before - there is a noticeable heaviness and lack of desire to respond to my brain's instructions to lift. There is also the slightest tingle in the finger.
This could be a side effect of the Prednisone (unlikely, I think), or simply because the IVIG treatment was two months ago and is wearing off. Interesting to note the rate of the decay - it took weeks to start working again, but seems to have stopped working relatively quickly. I am far from ready to try another dose of the juice; still have another two weeks to wind down the Prednisone and assess its effects.
And as usual, a change like this has me feeling depressed. I almost felt like going back to bed and staying there all day. Fortunately, there is enough to do at work so here I am.
Still have some more tests next week that might shed some further light on exactly what thing I have. In the meantime, it's a case of "let's try this and see what happens".
In the meantime, I've noticed in the last day that my right finger has reverted a little, and there is less movement. It seems a bit different to what it was a few months ago before any treatment. My wife thinks I'm really good at describing pain and physical sensations. This feels a little different to before - there is a noticeable heaviness and lack of desire to respond to my brain's instructions to lift. There is also the slightest tingle in the finger.
This could be a side effect of the Prednisone (unlikely, I think), or simply because the IVIG treatment was two months ago and is wearing off. Interesting to note the rate of the decay - it took weeks to start working again, but seems to have stopped working relatively quickly. I am far from ready to try another dose of the juice; still have another two weeks to wind down the Prednisone and assess its effects.
And as usual, a change like this has me feeling depressed. I almost felt like going back to bed and staying there all day. Fortunately, there is enough to do at work so here I am.
Wednesday, February 4, 2009
and the results are ...
I really need to learn to adjust my expectations. The spinal tap was supposed to explain/reveal so much about specifically what condition I had, and the reason behind the side effects. Instead, the results are inconclusive, and I am left feeling flat, exhausted (is it the hot weather, the return to work, or a side effect?), and as uncertain as ever.
The protein levels were elevated, but not sufficiently to indicate CIDP over MMN. There was slight inflammation, but not sufficiently to confirm aseptic meningitis. Could be that the meningitis was more clearly indicated if we had done the spinal tap sooner after the initial IVIG treatment (it's been over six weeks), and now we are seeing only a residual inflammation. So, to summarize the test results in lay-speak: "it might be this, but on the other hand, it could be that, and the side effects might have been because of the other".
Bottom line: my neuro is putting me on a short (three week) course of Prednisone in the hope that it might reduce the inflammation, and therefore the headaches. They may also have an effect on the primary condition. And I am left still wondering, and have to pick up some more Panadol - the bulk size *sigh*.
The protein levels were elevated, but not sufficiently to indicate CIDP over MMN. There was slight inflammation, but not sufficiently to confirm aseptic meningitis. Could be that the meningitis was more clearly indicated if we had done the spinal tap sooner after the initial IVIG treatment (it's been over six weeks), and now we are seeing only a residual inflammation. So, to summarize the test results in lay-speak: "it might be this, but on the other hand, it could be that, and the side effects might have been because of the other".
Bottom line: my neuro is putting me on a short (three week) course of Prednisone in the hope that it might reduce the inflammation, and therefore the headaches. They may also have an effect on the primary condition. And I am left still wondering, and have to pick up some more Panadol - the bulk size *sigh*.
Saturday, January 31, 2009
that was spinal tap
A spinal tap, or lumbar puncture, is not a pleasant experience, although in hindsight, like so much of this, the anticipation is far worse than the procedure itself. It was done as a day procedure, and not content for just my wife to accompany me, my mother had to come along as well (despite anything either of us could say to dissuade her). In the waiting area, we spotted what looked like a Greek family accompanying someone who was being admitted. They were a party of six plus the patient, so I guess my "entourage" was relatively small.
The whole thing is quite simple, and done under X-Ray. So I'm lying there on my side, and there's a big X-Ray apparatus that slides over the top of me, and the radiologist is able to see live pictures of exactly where to put the needle in so he gets the right spot. Fortunately, he did it quite well, and it worked first time. Indeed, all the of hospital staff were fantastic - very friendly and helpful. Funny how all of the people in the room put on four-part X-Ray "flak jackets" covering every part of their body while I'm lying there in just a gown.
It takes several minutes for the cerebrospinal fluid to leak out of the hole they make, so I'm making small talk with the guy to pass the time. After it's finished, I suddenly get all sweaty and shaky, but this passes after a few minutes. Perhaps the relief of it being over. I had been anticipating this for several days since my appointment, and it has probably contributed to slightly worse headaches than usual.
Afterwards, I have to lie flat for two hours, just in case the hole in spinal sac containing the fluid does not close properly. Fortunately, this appears to be OK, although my headaches have been worse since the procedure. The information sheet advised of possible headaches after having a lumbar punture - is this a side effect resulting from the procedure to help deal with the side effects? The recent heat wave, and my return to full time work after a break may also been contributors to this. Should get some results in a couple of days, which will hopefully give answers on some burning questions, and perhaps an end to these headaches!
The whole thing is quite simple, and done under X-Ray. So I'm lying there on my side, and there's a big X-Ray apparatus that slides over the top of me, and the radiologist is able to see live pictures of exactly where to put the needle in so he gets the right spot. Fortunately, he did it quite well, and it worked first time. Indeed, all the of hospital staff were fantastic - very friendly and helpful. Funny how all of the people in the room put on four-part X-Ray "flak jackets" covering every part of their body while I'm lying there in just a gown.
It takes several minutes for the cerebrospinal fluid to leak out of the hole they make, so I'm making small talk with the guy to pass the time. After it's finished, I suddenly get all sweaty and shaky, but this passes after a few minutes. Perhaps the relief of it being over. I had been anticipating this for several days since my appointment, and it has probably contributed to slightly worse headaches than usual.
Afterwards, I have to lie flat for two hours, just in case the hole in spinal sac containing the fluid does not close properly. Fortunately, this appears to be OK, although my headaches have been worse since the procedure. The information sheet advised of possible headaches after having a lumbar punture - is this a side effect resulting from the procedure to help deal with the side effects? The recent heat wave, and my return to full time work after a break may also been contributors to this. Should get some results in a couple of days, which will hopefully give answers on some burning questions, and perhaps an end to these headaches!
Tuesday, January 27, 2009
more tests
Had a review with the Neurologist today, which confirmed that remains some increased strength in my hands after the initial IVIG treatment. It's not back to 100%, but it's better than it was a couple of months ago. Being just the first treatment, we must now sit back and see how long it lasts.
Some questions remain unanswered, like why I still have headaches, and he suspects that I may be suffering from an uncommon side effect of IVIG - aseptic meningitis (aseptic as in not the nasty form of meningitis that is really dangerous, but rather the benign one that gives headaches instead). There is also still some doubt as to whether what I have is MMN or actually CIDP. He expressed this possibility earlier, because of the way certain nerves were affected, and this doubt was also indicated by comments from another doctor who reviewed my case, and asked for further information.
So the obvious thing to do is to stick a needle in my back and extract some fluid - the magical cerebrospinal fluid which contains (we hope) the answers to the mysteries that lurk within my body. The lumbar puncture, or spinal tap, is something I've seen plenty of times on TV in medical dramas. I guess the only good thing about having one is that I won't see it - I'll be facing the other way trying to think of something distracting. Do you think they'll let me listen to my iPod during the test? My fear of needles keeps being tested by all these damn tests and treatments, and is something I will just have to get used to.
Some questions remain unanswered, like why I still have headaches, and he suspects that I may be suffering from an uncommon side effect of IVIG - aseptic meningitis (aseptic as in not the nasty form of meningitis that is really dangerous, but rather the benign one that gives headaches instead). There is also still some doubt as to whether what I have is MMN or actually CIDP. He expressed this possibility earlier, because of the way certain nerves were affected, and this doubt was also indicated by comments from another doctor who reviewed my case, and asked for further information.
So the obvious thing to do is to stick a needle in my back and extract some fluid - the magical cerebrospinal fluid which contains (we hope) the answers to the mysteries that lurk within my body. The lumbar puncture, or spinal tap, is something I've seen plenty of times on TV in medical dramas. I guess the only good thing about having one is that I won't see it - I'll be facing the other way trying to think of something distracting. Do you think they'll let me listen to my iPod during the test? My fear of needles keeps being tested by all these damn tests and treatments, and is something I will just have to get used to.
Sunday, January 18, 2009
the juice's journey
I feel sometimes that the "juice" is making its way through my body, visiting here and there, and having effects of sorts, some good, some less than good. Every day is something different. The respite of pain in my wrist lasted maybe 48 hours, and seems to have reverted. The strength in the wrist has also diminished. Oh, and the headaches are back, as well as a bit of neck pain. I've felt a bit nauseous over the last few days, although that could just be a result of different eating habits during time on holiday. So much to analyse; so little that can be understood.
Mine does not appear to be a "standard" case of MMN, if there even is such a thing. This appears evident from my doctor's written report, and also from the feedback from another specialist who has reviewed my case. He found the data "fascinating", which may be an appropriate term for an observer who hungers to learn from the many cases he gets to see. For me, sitting inside the observation booth , the term is almost distasteful.
They speak of the "yoyo effect" of treatment, and it seems this exists both at a micro and macro level. On a day to day basis, my mood goes from optimistic to bitterly despondent and depressed. And I've hardly been in this long enough to get a macro perspective!
Mine does not appear to be a "standard" case of MMN, if there even is such a thing. This appears evident from my doctor's written report, and also from the feedback from another specialist who has reviewed my case. He found the data "fascinating", which may be an appropriate term for an observer who hungers to learn from the many cases he gets to see. For me, sitting inside the observation booth , the term is almost distasteful.
They speak of the "yoyo effect" of treatment, and it seems this exists both at a micro and macro level. On a day to day basis, my mood goes from optimistic to bitterly despondent and depressed. And I've hardly been in this long enough to get a macro perspective!
Thursday, January 15, 2009
the analyst
I am an analyst. No, I don't work as an analyst, say for an investment company or an IT firm, Rather, I am an analyst. It's what I am, and it's what I do. All the time. Everything around me is the subject of constant analysis - what is going on and why. Cause and effect. How things work and why.
Had a swimming lesson the other day (it's a long story). Not enough to just take the instructor's word regarding the correct way to do things, but I had to understand why they are correct - the physics or dynamics of the swimming form, and why it works. Once I did, the learning stuck much better, because I knew why I had to keep my head down; why my head movements to come up for breath had to be a certain way.
I enjoyed simultaneous equations in school. N variables and N equations. Didn't matter how many there were; as long as there the number of variables equalled the number of equations, exactly one solution could be found. That's what I like. Determinism. That's why I enjoyed the sciences, and despised the humanities. The latter were so wishy-washy, and there was no way you could know your answers were correct. That's probably why my main business runs computer systems that perform millions of complex billing calculations every month on behalf of our clients.
Now, I am living in a world of non-deterministic MMN. There is no direct or simple cause and effect. There is only fuzzyness.
Yesterday, for the first time in at least a year, the pain in my right wrist subsided, and I was able to put pressure on it (like when doing a push-up). So, a full month after starting treatment, it does seem to have helped, with significant restoration of strength in both the hand and wrist. I look forward to my next appointment where some objective tests will be applied. Also keen to see if my leg spin bowling is any better.
The side effect issue still sits there. Having returned from my holiday, it seems the absence of headaches may be related to being in a calm and relaxed environment (pity I can't stay there all the time). Will pick up another large box of nurofen and panadol before we go away again for another week tomorrow.
Had a swimming lesson the other day (it's a long story). Not enough to just take the instructor's word regarding the correct way to do things, but I had to understand why they are correct - the physics or dynamics of the swimming form, and why it works. Once I did, the learning stuck much better, because I knew why I had to keep my head down; why my head movements to come up for breath had to be a certain way.
I enjoyed simultaneous equations in school. N variables and N equations. Didn't matter how many there were; as long as there the number of variables equalled the number of equations, exactly one solution could be found. That's what I like. Determinism. That's why I enjoyed the sciences, and despised the humanities. The latter were so wishy-washy, and there was no way you could know your answers were correct. That's probably why my main business runs computer systems that perform millions of complex billing calculations every month on behalf of our clients.
Now, I am living in a world of non-deterministic MMN. There is no direct or simple cause and effect. There is only fuzzyness.
Yesterday, for the first time in at least a year, the pain in my right wrist subsided, and I was able to put pressure on it (like when doing a push-up). So, a full month after starting treatment, it does seem to have helped, with significant restoration of strength in both the hand and wrist. I look forward to my next appointment where some objective tests will be applied. Also keen to see if my leg spin bowling is any better.
The side effect issue still sits there. Having returned from my holiday, it seems the absence of headaches may be related to being in a calm and relaxed environment (pity I can't stay there all the time). Will pick up another large box of nurofen and panadol before we go away again for another week tomorrow.
Monday, January 12, 2009
good therapy
Important discovery: being on holiday in a fine resort is good for you! Very relaxing over here; side effects have mostly subsided, with the occasional headache. Certainly it seems the quiet over here helps. There is definitely more strength in my hand. Still some pain and weakness, particularly around the wrist. Every day brings different sensations around different parts of my right hand. Cramps in my calves are far less frequent. I'm thinking of developing some of my own objective tests of muscle strength and the like, so I can get a better sense of whether and how the juice works.
Still need to do some further research into the side effects. It seems the extent of mine are not so common. Next visit to the Neurologist is in a couple of weeks, so that should be an interesting discussion. In the meantime, best to make the best of my time away.
Still need to do some further research into the side effects. It seems the extent of mine are not so common. Next visit to the Neurologist is in a couple of weeks, so that should be an interesting discussion. In the meantime, best to make the best of my time away.
Wednesday, January 7, 2009
relaxing in the sun
Daily ritual for the last 6 days: wake up and take some pain and nausea meds. That has typically been enough to set me right for the day. There does appear to be some increased strength in my right hand, which is a little encouraging. Today, the headache was there early in the morning, but subsided. Wrist is especially sore today, but I'm not going to bother with medication (yet).
The last few days on holiday in the Sunshine Coast have been quite relaxing. Am especially looking forward to today: the younger kids are all going away on an excursion or being taken care of, so it's spa day for myself and my wife.
Probably the malaise most affecting me at this stage is "over analysis". I'm an analytical person at the best of times, always thinking, and needing to understand what is happening and why. So trying to work out what is a symptom, or a side effect, or a result of getting away from the daily grind, is almost impossible.
Before I started the initial IVIG treatment, I decided to visit a Traditional Chinese medicine (TCM) practitioner for an alternative diagnosis. Even at that stage, the thought of having regular infusions was very unattractive, so having someone else look at the problem before any treatment and give an opinion seemed like a good idea.
The practitioner told me I had an enlarged liver, that I didn't get enough sleep (correct), and that this was partly because I went to bed each night with too many unfinished things on my plate (he was right about a lot of unfinished things). To TCM people, it's about energy flows within the body. He had found a blockage, and before I could even thank him for the diagnosis, he launched into some initial treatment. I didn't go beyond that, because I am determined to try one thing at a time so as to understand what does and doesn't work.
Here is the paradox: I will accept a formal diagnosis from a western doctor based on blood work and diagnosting imaging, despite the fact that they don't know the cause of the condition, don't have a cure, and don't know why or how the treatment works. Yet with the TCM practitioner, I demand to know the link between his diagnosis and the symptoms - needing him to justify himself. It does seem that our western society trusts medical practitioners despite so many unknowns surrounding much of their work.
Today's challenge: forget all about it while I attempt to detox my body in the sauna, melt away in the spa and at the massage table, and immerse myself in a good crime novel. For me, that's an formula that is empirically proven to work.
The last few days on holiday in the Sunshine Coast have been quite relaxing. Am especially looking forward to today: the younger kids are all going away on an excursion or being taken care of, so it's spa day for myself and my wife.
Probably the malaise most affecting me at this stage is "over analysis". I'm an analytical person at the best of times, always thinking, and needing to understand what is happening and why. So trying to work out what is a symptom, or a side effect, or a result of getting away from the daily grind, is almost impossible.
Before I started the initial IVIG treatment, I decided to visit a Traditional Chinese medicine (TCM) practitioner for an alternative diagnosis. Even at that stage, the thought of having regular infusions was very unattractive, so having someone else look at the problem before any treatment and give an opinion seemed like a good idea.
The practitioner told me I had an enlarged liver, that I didn't get enough sleep (correct), and that this was partly because I went to bed each night with too many unfinished things on my plate (he was right about a lot of unfinished things). To TCM people, it's about energy flows within the body. He had found a blockage, and before I could even thank him for the diagnosis, he launched into some initial treatment. I didn't go beyond that, because I am determined to try one thing at a time so as to understand what does and doesn't work.
Here is the paradox: I will accept a formal diagnosis from a western doctor based on blood work and diagnosting imaging, despite the fact that they don't know the cause of the condition, don't have a cure, and don't know why or how the treatment works. Yet with the TCM practitioner, I demand to know the link between his diagnosis and the symptoms - needing him to justify himself. It does seem that our western society trusts medical practitioners despite so many unknowns surrounding much of their work.
Today's challenge: forget all about it while I attempt to detox my body in the sauna, melt away in the spa and at the massage table, and immerse myself in a good crime novel. For me, that's an formula that is empirically proven to work.
Thursday, January 1, 2009
happy new year?
Woke up with a splitting headache this morning, and for all the wrong reasons. Usually, it might be due to an overindulgence in celebrating the new year. But a Strongbow, a couple of episodes of The Mentalist, and a 1am bed time hardly add up to a big party. So I was quite surprised that the nasty headaches had returned with a vengeance. How long will they continue? I so hate having to keep taking drugs for them, especially ones that don't reall work that well anyway.
There does seem to be a further increase in strength in my right hand. And yet, I am still left with so many questions about this process. Being on the wrong end of the seeming black art of Neurology is not a fun experience. One thing is clear: nothing happens quickly, and during 2009, there is still so much I will learn about my situation and how to best deal with it.
There does seem to be a further increase in strength in my right hand. And yet, I am still left with so many questions about this process. Being on the wrong end of the seeming black art of Neurology is not a fun experience. One thing is clear: nothing happens quickly, and during 2009, there is still so much I will learn about my situation and how to best deal with it.
Subscribe to:
Posts (Atom)