Yes, it's been way too long since I've written. Miss me? Sorry, a lot has been happening and some complex reasons why I haven't updated thing here. I will probably do a few back-dated posts to talk about some of the interesting things that have been happening. In the meantime ...
For the last few weeks, I've had this weird pain in my right bicep. It happens whenever I flex it to lift something heavy. There isn't a loss of strength, but there is pain, and there wasn't anything (that I can recall) that happened to me that might have caused it. At first, I thought it was muscular, so I asked the physiotherapist that I do pilates with regularly. She said it didn't look like a muscular injury, and it hasn't been getting any better (which you'd think it would over time). If not muscular, then ...
I got in touch with my neurologist's office (who was away), and they suggested an appointment for as soon as he returned. He looked at it, and felt it wasn't related to my multifocal motor neuropathy. As I flexed the arm, he spotted what looked like a lump. He figured it was either a ganglian or a hematoma (i.e. nothing really bad), so he sent me for an ultrasound ...
The ultrasound technician looked high & low, left & right (well, actually just right, but it sounds good), and concluded that there was no swelling and no lumps!
The neurologist still thinks it's unrelated to MMN; the physio says isn't not inflamed or torn, and of course it still hurts when I use it. So what now? I'm taking some anti-inflammatories to see if that fixes it. No-one has any explanation, so it's just the usual trial and error :(
Tuesday, October 19, 2010
Thursday, March 11, 2010
The dread
It happens every time. I go in for juicing, then set the date for the next one and work my diary around that. As the date approaches, I am filled with dread that won't go away. I hate the juicings. I hate the needles. Most of all I hate the side effects that always happen. But I have no choice; I have to just push myself and do it.
Had to have a couple of blood tests in the last two weeks. Those are relatively easy to procrastinate by a few days, but eventually I have to do them. They actually weren't so bad - good operators who do the small talk to distract me as I stare up at the ceiling. And afterwards, it doesn't seem as bad as the anticipation warranted. But that doesn't reduce it at all.
I have to consciously push out those feelings of dread as the juicing day approaches. I have my little rituals: go in to the office for a quiet cup of tea before taking a taxi to the hospital. Take it easy afterwards and usually book a massage for the afternoon, and reserve the next day or so as rest. Does it help? Who knows. Does it reduce my anxiety and dread? Sadly, no.
So off we go again tomorrow.
Had to have a couple of blood tests in the last two weeks. Those are relatively easy to procrastinate by a few days, but eventually I have to do them. They actually weren't so bad - good operators who do the small talk to distract me as I stare up at the ceiling. And afterwards, it doesn't seem as bad as the anticipation warranted. But that doesn't reduce it at all.
I have to consciously push out those feelings of dread as the juicing day approaches. I have my little rituals: go in to the office for a quiet cup of tea before taking a taxi to the hospital. Take it easy afterwards and usually book a massage for the afternoon, and reserve the next day or so as rest. Does it help? Who knows. Does it reduce my anxiety and dread? Sadly, no.
So off we go again tomorrow.
Friday, February 26, 2010
Plenty Happening
It's been a while since I've posted, and it's been an interesting few months. Since coming back from Mayo, we decided to reduce the dosage, so I've been on 33g (just one day) every 3.5 weeks. The other thing we tried was to switch to Octagam instead of Intragram P (an Australian product) in an attempt to test whether this would make any difference to side effects.
The usual side effects still seem to be happening - headaches and fluey feeling. Last treatment - about 10 days ago, there was nausea as well, so it wasn't very pleasant! While the strength tests I use seem to indicate the usual small spike after receiving treatment, something else has been happening over the last few weeks.
My right hand has become somewhat inflamed - the middle finger in particular. There is a noticeable weakness and fatigue in the hand when I use it, so much so that it gets quite sore by the end of a work day. After going for a power walk, my entire right hand feels very bloated. I have switched mouse hands to my left in an attempt to use the right hand less - that has been a huge challenge! My general practitioner sent me for some blood tests, and I see my neuro next week, so it will good to get some professional feedback and hopefully some answers.
The usual side effects still seem to be happening - headaches and fluey feeling. Last treatment - about 10 days ago, there was nausea as well, so it wasn't very pleasant! While the strength tests I use seem to indicate the usual small spike after receiving treatment, something else has been happening over the last few weeks.
My right hand has become somewhat inflamed - the middle finger in particular. There is a noticeable weakness and fatigue in the hand when I use it, so much so that it gets quite sore by the end of a work day. After going for a power walk, my entire right hand feels very bloated. I have switched mouse hands to my left in an attempt to use the right hand less - that has been a huge challenge! My general practitioner sent me for some blood tests, and I see my neuro next week, so it will good to get some professional feedback and hopefully some answers.
Friday, November 20, 2009
Reflecting on Mayo
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.
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.
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.
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