Quote:
Originally Posted by Cally22
HI,
I am a 25 year old that has been suffering from autonomic and small fiber neuropathy for the last few years. I also suffer from autoimmune disorders and gastroparesis, as well as tmj. My autonomic neuropathy causes me to pass out from low blood pressure and I have injured myself so many times it is not funny. These diseases have controlled my life for too long. It is scary sometimes, as I get so dizzy and light headed I cannot even walk. I have to get IV fluid three times a week just to keep my bp up. Life has not been life for me in a long time... I am just looking for some relief. Anyone suffering like me? Anyone have any success stories... I was just starting some IV IG therapy and I got my first week of treatment and contracted aseptic meningitis... UGHHHH!!!
Mandy  |
I'm 53 and I also suffer from small fiber, autonomic and large fiber neuropathy. I fell ill when I was 24 and it took until yesterday to be diagnosed. Doctors didn't believe my symptoms so no one did the testing I needed. Almost everyone said I was a psych case, but testing proved otherwise. I've been practically living on the sofa for the past 25 years and letting life slip through my fingers. Alive, but not living. My neuro prescribed Neurontin, Mestinon, Cymbalta and Alpha-Lipoic acid yesterday. She said she didn't know the cause and probably wouldn't ever. I find this hard to swallow, as I had a strep infection immediately before I became ill. Interesting (scary, actually) that you contracted aseptic meningitis after IVIG. I contracted meningitis 6 years ago for no apparent reason and it was awful. I was hospitalized for 12 days while we were out of state.
Anyway, just wanted to chime in and let you know you're not alone. This illness and the pain that comes with it is like living in . . . well, you know.
All the best to you. I'll keep you in my thoughts and prayers.