August 30, 2010 at 5:38 pm #9202AnonymousInactive
If you have a CIDP variant such as MADSAM or Lewis Sumner where is a forum for you? Would you’all say it’s still just plain ole CIDP?
I reckon not. how say you?
September 4, 2010 at 6:20 pm #95024AnonymousInactive
I haven’t got a clue. Let us know when you find out.
September 5, 2010 at 9:34 am #95034AnonymousInactive
John, see below for one response to the question. Note that there are tests which can help determine which variant one has. I wonder if you have had any of these done and, if not, whether it might be worth your while, given the many years you have been without a concrete dx.
BTW, my local neuro finally decided I had MADSAM/Lewis-Sumner due mainly to the asymmetrical presentation and lack of proximal nerve involvement. He talked about it in terms of a variant rather than its own disease. Now the folks here at Northwestern, having done the exact same tests and clinical exams as my local guy, never even mentioned MADSAM…just treated me as though I had “regular” CIDP and approved me for the SCT.
I think that, at this level, medicine is probably as much an art as a science…what one sees (and therefore one’s interpretation and recommended treatment plan) is filtered one’s particular perceptions, biases, training, assumptions, etc. So two people might see the same thing, but see them very differently.
September 5, 2010 at 6:51 pm #95042AnonymousInactive
Well, smitty, here’s the answer(s) thanks to anastasia52 aka sharon and emily’s mom.
Madsam is Lewis Sumner.
wow, I really, really wish there was a sticky for great! websites like emilys mom and sharon linked us to here
Now sharon’s link required a free subscription. No big deal.
Madsam means you have a variant of the classic cidp. The conclusion. Yep, you belong on this website.
Again, thanks to the responders.
September 9, 2019 at 3:59 pm #1171363wheelinParticipant
I was diagnosed with lewis-sumner / madsam about 4 years ago. From my understanding it’s the exact same thing. As everything else on here it’s rare and hard to find any answers. I actually just found this place today and joined
September 9, 2019 at 7:57 pm #117140Jim-LAModerator
Dr Lewis can be reached here if you wish to contact him about the latest treatments for the disease:
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