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Questions for Dr. Kennedy
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CIDP
Posted by: Danny Ridgway
Date: November 6, 1999 2:36 AM

I am a victum of CIDP, Transverse myelitis, Gillian Bere, or what? I have had this condition for 21/2 yrs, every time I have a "relapse" its classified something else.Any one have a concrete answer to these related disorders?

RE: CIDP
Posted by: Sue
Date: July 2, 2000 6:25 PM

I have had problems for a while and just spent six weeks thinking I had MS. Ended up in hospital with diagnosis of CIDP then told it wa guillain-barre. Anyway it s one or the other. I refused the spinal tap as it changes diagnosis rom 90 percent to 95 and the treastments seemed to have not much benefit as i am remitting (i think). Scariest thing I heard was the possibility of not being able to breathe and the mention of ventilators.

RE: CIDP
Posted by: sue
Date: July 2, 2000 6:29 PM

Hi -- i have had problems for a while and just spent six weeks thinking i had ms. Ended up in hospital with diagnosis of cidp then told it wa guillain-barre. Anyway it s one or the other. I refused the spinal tap as it changes diagnosis rom 90 percent to 95 and the treastments seemed to have not much benefit as i am remitting (i think). Scariest thing i heard was the possibility of not being able to breathe and the mention of ventilators. would love to chat about this as i don t know a whole ot - email me - and good luck.

RE: CIDP
Posted by: TERRY DINGLER
Date: September 29, 2000 8:33 PM

HI Margret my name is Terry.I have had cidp for almost 3 years now.I have had almost every treatment known to man.I"ve had ivig, plasmaexc, steroids,cyclosporin, alfainterferon,and one expermental drug.None of them seem to work except steroids and Ihad to quit takeing them because they caused cateracts.I had cateract sugery on my second eye 2 months ago. I'm not able to walk or stand, I have very little use in my hands they are contracted.I type with my thumb.I would like to here back from you about how you are doing, can you walk and how it has affected you and how you are dealing with this diease.
sincerly Terry
p.s. i'm very interested in what you can tell me about cidp.



This Thread has been closed

 




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