Reply To: Undiagnosed – unusual deterioration course

February 7, 2017 at 9:31 pm

I have been through so many changing symptoms over the last year. I have seen multiple physicians since my symptoms became alarming and affecting my quality of life. I have had blood work, emgs/nerve conduction studies, brain MRI, etc… Viral/ bacterial infection ruled out. 5 hour glucose tolerance test showed a slight impairment in glucose metabolism. Not enough to treat with meds, instructed to eat a low carb diet. My concern is, the Pain /rehab doctor I saw said I have cidp based on emg results he performed, and other labs at the time, the neurologist I saw after said no, you have small fiber nerve disease, confirmed with skin punch biopsy. I was dismissed by rheumatologist, and referred back to neurologist. I was so worried that I had an autoimmune disease, she (Rheumatologist) told me I didn’t have rheumatoid arthritis and that was it. I told her how bad my facial sweating could be, and she said “you weren’t sent here for sweating”, I already knew my RH factor was negative, I was concerned with other autoimmune process.I have days where I feel OK, 600mg gabapentin three times a day, then I have what I call “flare ups” where I not only have the burning pain in toes and heel, up back of ankle, then skips up to what feels like same burning pain deep in rectum and sometimes buttock area. I know, sounds crazy, but this is no joke, very painful, then with the “flare up” my joints can ache so bad, difficult to stand from seated position, knees, hip and bilateral fingers ache and feel stiff. Had negative RH factor, sed rate normal, crp slightly elevated. My face, neck and chest sweat to where it can drip off of me. I am very intolerant to heat, but cold hurts too. I had been on Prednisone last winter for ear inflammation and that’s when I noticed how much relief I got from the aching. With all that being said,can anyone differentiate cidp from small fiber nerve disease. I know the rehab doc said I would probably need to keep Prednisone on hand, and possibly try immune suppressants and IVgg. Neurologist never suggested anything other than gabapentin. I just assumed because SF nerve biopsy was positive. I was given a 3 month follow up appointment,and thought I would wait it out, but pain is worsening. I am very discouraged. I just want to feel better and get the best treatment I can. Does anybody have any insight or thoughts. Thanks Carla