Back in March, I decided to investigate some alternative therapies, and was referred to a traditional Chinese medicine (TCM) practitioner. He was quite a character - a gentleman in his early 60s - who spoke in Australian vernacular, but with a Chinese accent. His appointments ran about a month in advance, which seemed to bode well for his reputation. After feeling my pulse, looking at my tongue and my eyes, he pronouned his assessment: "you got too much heat; you need to bloody-well slow down". Yes, I work long hours (well, not as long as I used to). Yes, there is a lot of stress in my life. Yes, my mind races in overdrive all the time. Yes, I eat spicy food.
As someone brought up on western medicine, I asked the obvious question: what is the link between the diagnosis and my symptoms? No ... it doesn't work that way. The diagnosis is that I have too much heat. How that manifests itself may differ from one person to another. Fix the underlying problem, and my balance is restored, and this should result in the symptoms going away. It's a totally different approach - treat the person, not the illness - and difficult for me to get my head around.
Yet, he was a no-nonsense sort of guy. He put it quite simply: start with three treatments, and if you don't notice an improvement, then this probably won't work for you. So he went at me with needles, cupping, and a handful of other things. I cut out spicy and deep-fried foods.
Three weeks later, there was a small improvement to my "heat", but there wasn't much noticeable change, so we decided to quit there.
I was a little disappointed - I was hoping there would be an alternative therapy answer, especially after coming back from the Mayo with little encouragement. But I also needed to take a measured approach to dealing with this, and not just throw s**t at the wall hoping something will stick. Although in hindsight, it was a particularly stressful time of my life, so I thought it might be worth revisiting at some point in the future.
So a couple of weeks ago, I put out feelers in the "network" for some good TCM practitioners, identified someone, and made an appointment (didn't take a month this time), and she examined me in the usual way in our initial consultation. Her diagnosis: too much heat ...
Thursday, November 25, 2010
Thursday, November 18, 2010
No diagnosis, but successful treatment
Usually, when something is wrong with you, you get a diagnosis, and that leads to a course of treatment to fix what is wrong. So what happens when no-one can work out what is wrong with you?
The neurologist at first thought my sore bicep was unrelated to multifocal, but saw what he thought was a lump. After ultrasound revealed the muscle was normal, he was stumped. He suggested anti-inflammatories, but they didn't help, and there was no evidence of inflammation in any case. My pilates instructor (who is also a physiotherapist) didn't see any indication of muscle damage, and there was no trauma event that triggered this.
The only person to provide any explanation was a massuese, who said the muscle felt matted and dehydrated, which might have been because I was getting my infusions in the same arm all the time, and the "juice" flowed through the big bicep muscle. Both the nurse who administers the infusions, and my neurologist said this was nonsense from a medical perspective. Although I did get the most recent juicing in my left arm. Unfortunately, my veins aren't as prominent in that arm, so all I had to show were some nasty bruises.
After all that, the bicep pain continued, so I thought I'd try some physio - massage and ultrasound - and that is working. The physiotherapist still has no idea what the problem was, but if the shoe fits, then ...
The neurologist at first thought my sore bicep was unrelated to multifocal, but saw what he thought was a lump. After ultrasound revealed the muscle was normal, he was stumped. He suggested anti-inflammatories, but they didn't help, and there was no evidence of inflammation in any case. My pilates instructor (who is also a physiotherapist) didn't see any indication of muscle damage, and there was no trauma event that triggered this.
The only person to provide any explanation was a massuese, who said the muscle felt matted and dehydrated, which might have been because I was getting my infusions in the same arm all the time, and the "juice" flowed through the big bicep muscle. Both the nurse who administers the infusions, and my neurologist said this was nonsense from a medical perspective. Although I did get the most recent juicing in my left arm. Unfortunately, my veins aren't as prominent in that arm, so all I had to show were some nasty bruises.
After all that, the bicep pain continued, so I thought I'd try some physio - massage and ultrasound - and that is working. The physiotherapist still has no idea what the problem was, but if the shoe fits, then ...
Tuesday, October 19, 2010
new symptom?
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 :(
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 :(
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.
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