Reply To: Mysterious Disease

November 7, 2018 at 10:45 am

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.