Reply To: Autonomic Issues with CIDP?

Thoughts, in no particular order-

1. I was given Mestinon on a trial basis by Cleveland Clinic Ohio. It made absolutely no difference in my condition.

2. you have defined what Mestinon is. It is used in the treatment of Myasthenia Gravis a condition not similar to CIDP. The difference has to do with where the immune system attacks what. Therefore, what the Mestinon treats will likely not help typical CIDP demylination at all. If you haven’t already, visit this site-

http://myasthenia.org/WhatisMG.aspx

3. some doctors, considered experts by others, have stated something like this, ‘…if IVIG helps you, you probably have CIDP. think back. How long have you had “decreased ankle jerks” by this I thought you meant absent (or weak) deep tendon reflexes. Long time damage takes a long time, if ever, to repair.

4. One NIH study sums up with …”Moderate to severe autonomic deficits in a more widespread distribution (CASS ≥4) were not found in our CIDP series. When present, concern for an alternative diagnosis should be raised….”

here- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3306161/

And, their conclusion repeats with this final sentence: “Extensive or severe autonomic involvement (CASS ≥4) in suspected CIDP should raise concern for an alternative diagnosis.”

I was thoroughly tested at least twice at Mayo Clinic’s Rochester, Minn Autonomics Lab. All results were negative.

Strive for some 2nd and 3rd diagnoses. Recall the TV show Medical Mystery. some conditions are rare as well as misunderstood.

Good luck.