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.
Showing posts with label peter james dyck. Show all posts
Showing posts with label peter james dyck. Show all posts
Friday, November 20, 2009
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.
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