similar? what next?

ms. judy,

Yes, I could say my case is similar. Although the big difference is, I didn’t get a diagnosis until last year. Consequently, I was ineligible for some studies because i did not have a cidp diagnosis.

I suggest you read these links. Yes, they are long and complicated, but they might help you understand what we are up against.

http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

I refer to this part of the above link- “Unfortunately, because of the lack of clarity with regard to diagnostic criteria for CIDP, many patients remain untreated.”

The two sentences below excerpted from this link really sum up the problem:

http://www.ncbi.nlm.nih.gov/pubmed/12707417

“Therefore, although patients may not meet the diagnostic criteria for inclusion in clinical trials of CIDP, they may still benefit from current and future treatments used in CIDP.”

What does it all mean? There’s lots of things you could have. You might not even meet the strict defined criteria for a diagnosis of CIDP. As I recall, the criteria scores fall into three categories-
1. Yes, you’ve got CIDP.
2. Well, you’ve probably got CIDP.
3. Uh, gee, you’ve possibly got CIDP. SO, I SAY REFER TO THE ABOVE “..may still benefit…”

And then there’s this:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117406/pdf/114.pdf

How is my case similar to yours?
1. A major clinic location said I did not have CIDP.
2. An MDA specialist was willing, and did, prescribe a course of IVIG for me and then, after 5 months stopped the treatment.
3. A second major medical clinic (Mayo) suggested my previous infusion was neither strong enough nor given often enough.

What’s the bottom line? After a 9 month gap I restarted IVIG and although there is no “whoop de do” recovery, I am no longer declining and grip strength in both hands has, and continues, to improve. The current course of treatment extends the previous 6 months’ infusions by an additional 12 months with the addition of an anti-rejection agent, Imuran.

It is not easy to decide what to do. But, we all need to keep learning and keep fighting and keep finding the best doctors we can. Good luck.