I agree with many opinons here…..

July 10, 2010 at 7:00 pm

As there are LOTS of opinions as to WHAT he HAS vs how to treat it.
In my case, issues were primarily sensory, but with a noticable muscular affect but it came later…I believe thru self-atrophy as I was not ABLE to even get out of a chair easily for several months after onset. Key to your husband is to get all the tests needed, and some are very, very expensive. IF you have insurance? Talk this over with a doc you are more likely to trust than others.
This is a good basic resource that distinguishes the subtle differences between many CIDP variations:
To find out about testing? Go to the index at the top of the page and at the top of that are tests that are mentioned in the text.
It IS complicated reading? But it IS a summary of each of hundreds of neuro issues! And, a valuable one! Once I was well on my way to a diagnosis, I’d found this site and everything fell into ‘place’. Also all the tests I’d been going thru were the right ones.
Next? What dosages of which brands of IVIG has your husband been getting? It simply doesn’t work if the dose isn’t at a good recommended amount. Web up the ‘brand’ of IVIG he’s been getting and do the math [computer web sites are great at helping you do the ‘conversions’]. Many docs are [I]conservative?[I][/I][/I] And thus not enuf when it’s needed – can’t do lawsuits on medical opinions tho….just find THE right doc [And I’ll pray that you do?] Makes all the diference.
Lastly, statistics on the ‘effectiveness’ of IVIG are stupidly vague! It varies from source to source…either 40%/60% or 80% who try it find relief.. But the clincher here is the DOSE.
Btw? I don’t have MADSAM. I’ve just got a solid bout of an autoimmune system running amok! It first got the nerves? Then tried to do a number on the muscles! I refused to let IT get me. It’s ‘almost’ controlled now, I just wish it’d give up and go away!
Hugs to you and your husband! It’s a hard fight, it can wear you down, but…It can help you see other more important things clearly? There is beauty in so many small sights, gestures and things! Hugs!