This is quite a thread! I’ve had both CIDP & Vasculitis.

Most of the drugs mentioned above have been used, including Rituximab.I now have a relapse of what appears to be severe, rapid onset of CIDP. I had my last Rituximab treatment in January – although I’ve been readvised that this is supposed to be repeated every 4 months. Last known CIDP was in 1998 treated with IVIG (although it could have easily been missed in a confusion of care received in both Los Angeles and Tennessee. Before Rituxan I was treated with Cytoxan, Cellcept, Prednisone, etc.

Good luck to all of you dealing with this condition. It is highly variable and affects so many of us differently with varying confusing presentations.

I would write much more but my hands aren’t working properly and typing is exceedingly difficult.

Hello Everyone:

Thank you for your responses. You should know that it is very difficult to type this as my hands are so affected. Hopefully I won’t make too many mistakes.

Jim, I have seen Dr. Donofrio. Since I have already had a bout with CIDP, I’m convinced this is either CIDP or GBS.I got a cold & far more severe symptoms rapidly days after seeing Dr. Donofrio & having the NCS/EMG. The blood work & Nerve Conduction studies have led Donofrio to state this does not seem to be CIDP. The Nerve conduction studies (although very incomplete considering my widespread symptoms & compared to my earlier studies) were felt to include damage to the Myelin Sheaths, Axonal involvement, etc. although the Doctor did not go into detail about more specific findings- saying it could reveal early findings & might change later. Donofrio is aware I am worse & offered the possibility of entering VUMC through the ER & “they will figure this out”.

Tomorrow I have a visit with a neurologist at another Nashville hospital who saved my life when I had severe, life threatening seizures (Status Epilepticus) in May & was hospitalized for nearly a month, in & out of thE ICU, On a ventilator, etc. Although I am still on 2 jut of the 3 anti-seizure meds (including high dose Gabapentin) the “cause” was guessed at by a Vanderbilt Specialist Dr. Sonmezturk who may or may not be correct. Gabapentin is used to treat some of the symptoms of CIDP – interesting.

OK, hello Zeinab. Thank you for sharing your experience. It is encouraging to hear stories from other patients – if somewhat discouraging. Sorry to hear you had to go through all that. The diagnosis of this condition can be devilishly difficult.

You apparently had the classic symptoms of bilateral pins & needles, numbness, tingling, weakness, etc. it is often difficult to perceive just how difficult it can be to negotiate the Medical Corporatocracy as a patient. However your story exemplifies how tenacious one needs to be to help find a diagnosis at times. I assume you have received IVIG & are better? Let us know!

Thank you all again for the support. Will let you know what happens.