Do you feel the CIDP is a correct diagnosis? I there a definitive test for that?

I am curious since you mention most issues are in her hands.. and was wondering if all types of repetitive strain have been ruled out?
Specifically Thoracic outlet syndrome..
I suppose it could be possible to have both the CIDP and some sort of RSI ...
Can you describe the symptoms she has with her hands?
Any neck/shoulder tension, or forward head posture?

Kay

get your neuro to refer her to another neuro for a 2nd opinion preferably one who has seen other CIDPers and have treated them with IVIG successfully

there are 2 CIDP centers of excellence..,one in Dallas and another in Houston

check out gbs-cidp as well as igliving websites as well

IVIG is treatment of 1st choice for anyone with a confirmed CIDP dx...don't fool around any longer...the sooner you can get your daughter on IVIG, the better the prognosis

since it has affected your daughters hands for the most part, her symptoms are suspicious of cidp madsam, aka lewis-sumner syndrome...that was/is my dx and ivig halted the progression for me after 22 ivig treatments over 13 months...am now in remission and hope to remain so....have permanent sensory and motor deficits and muscle atrophy but ivig rebooted my immune system and has halted the cidp progression

I honestly do not know if this is the correct diagnosis. From the EMG/NCS test of her arms, this is the summary:

1. Electrodianostic evidence of a moderate median neuropathy at the
wrist. This is conistant with with a clinical diagnosis of carpal tunnel
syndrome.

2. Electrodiagnostic evidence of peripheral polyneuropathy affecting both
sensory fiber involving bilateral upper extremities. Ployneuropathy also
affecting bilateral sural sensory fibers.

3. No electrodiagnostic evidence of left or right ulnar motor neuropathy.

A week or so later, she had her legs tested. They were not nearly as severe as her arms. I do not have those results. I also have not seen the results of the MRI or LP.

Her symptoms in her hands, are pain, weakness, unable to grip items (drops them), feeling of needles being inserted under her finger nails. Her hands are mostly cold and fingers often numb. Just recently she has the sensation of ants trying to crawl out through her feet. She is also very fatigued and seldom feels well.

The doctor verbally told is it was CIDP. He referred to it as a demylinating disease. He said that he felt that the myelin sheath would regenerate. I wanted so much to believe him.

I know now that whatever is going on is not getting better on it's own.

I need to get her help soon.

Kay

If you would like to read about TOS and chronic RSI's, just for your own knowledge base.. here is the link to our TOS forum, be sure to check out the sticky threads , you might find something that helps with her dx.

I hope the drs aren't focusing on any single dx, and possibly missing secondary conditions...

I don't know if any expert PT has been tried yet?
Often advanced PT's can do a more thorough evaluation than a dr that does not do any "hands on" assessment.
Especially if there is possible posture or repetitive strain issues.
I would try it at least to find out if some of the symptoms can be resolved..

Sural nerves are sensory nerves in the lower extremities. The fact she has neuropathy in upper & lower extremities could be CIPD--the inflammatory process is not in the joints but in the nerves themselves. Do you have neuropathy history in other family members? It also could be a hereditary neuropathy. Genetic testing may be worthwhile if that is suspected.

I understand not wanting to start her with treatment far away from home, but seeing a specialist to help diagnose her would be worth it--they often are willing to consult with your regular doctors to direct treatment.

Thank you so much for your replies. She has had PT. I'm not sure how good the therapist was. She said she did get some relief.

I have contacted one of the centers of excellence in Dallas.. Appointments are 6 months out. Hopefully, there will be a cancellation sooner.

Thank you all again, I would have never of known that these centers existed.

Kay

Sorry I forgot to add the TOS forum link-
http://neurotalk.psychcentral.com/forum24.html