Question: Hi - I wrote earlier that I have had a confirmed case of non-length dependent idiopathic small fiber neuropathy that started in March of this year and has been ongoing without any remission of any kind. I have had a very extensive workup (normal brain and cervical MRI with and without contrast, LP, autoimmune, ID and heavy metal panels etc.) throughout these months and nothing remarkable has come up but for the skin punch biopsy which confirmed very low density fibers in the thigh and shin. Over the past 2 weeks in addition to my general symptoms (hand/foot pain, zaps, hot/cold sensations, tingling etc.) my symptoms have gotten more pervasive and intensified somewhat with pain and tingling in my scalp and teeth/tongue and stiffness in my hands (fingers almost feel like they lock sometimes) along with periods of dizziness. I am wondering if I should be repeating the brain MR given the symptoms in the head and the dizziness. The neuros I spoke with had not thought anything would come of it given I had done one in April when I first had symptoms but I am not so sure.

Thank you for the feedback. That is consistent with what the other neuros have said. I also have tinnitus mostly in the left ear that developed. Do you think it is possible that the MRI missed it or it was too small at the time to be observed? Just hard to believe that the symptoms can be this scary without something like a tumor or else causing this.

Sorry and one more thing to add since I noticed that you had some experience in IVIG. I know the traditional answer as it stands right now is that IVIG has shown effectiveness in situations in which there is a clear autoimmune process and I have had none show up in my bloods but my symptoms are pretty unliveable and the immunologist and neuro think it may be worth a trial of IVIG to see if it helps. Have you had any success with idiopathic cases or have you only used it in the cases where there is either CIDP or GBS? Sorry for the tack on. Thx .