Hi everyone,

I've been reading these threads for the past week and a half, so I could get a better idea of what I'm dealing with and how to help myself. I'm 32 years old with no history of any major health problems. I went to the Neurologist a few weeks ago initially because I've been having dizziness and fatigue and a feeling of muscle weakness for several years now, and my PCP and my Rheumatologist couldn't find anything wrong with me. A week or so before my first neurologist appointment, I started having tingling sensations in my hands, with some light burning on occasion. I had maybe two episodes of this lasting a few days in the weeks before I saw the neurologist, so when I went to my first appointment with him, I mentioned those symptoms in addition to the dizziness and fatigue/weakness I'd been experiencing.

He suspected a vestibular disorder, but he ordered an MRI (at my request), blood work, and an EMG. My MRI was clean, and my EMG was normal. During my EMG, he was debating with the nurse on whether or not to test some nerve (I can't remember which), and he said, "Well, we'd only do that if she were having burning sensations, and she's not." And I spoke up and said, "Actually I have had a couple of episodes of burning." And he said, "Well, it might be small fiber neuropathy, but that wouldn't show up on an EMG," and that was all he said about it. The EMG was normal and they sent me on my way.

I didn't know what this condition was at the time, so after I left, I went home, Googled it, and freaked out for the entire weekend, because I started worrying that I was going to be in terrible, constant pain for the rest of my life. So this past Monday, I scheduled another appointment and asked the nurse to have him call me. When he called me back, I said I wanted to schedule a follow up with him to discuss what he mentioned in my EMG, because I was very concerned about it. Apparently the receptionists were supposed to schedule a follow up appointment with me regarding my blood work, but they never did, so he thought I was calling to discuss why he requested the follow up, when I hadn't even heard anything about my blood work being abnormal.

He said that I showed "slightly positive" (his words) for anti-sulfatide antibodies which would explain why I was having tingling and burning, that he could discuss treatment options with me but they weren't really all that effective, and that I could try IVIG if I wanted to. This whole thing has kind of surprised me, because I've had these symptoms for maybe 6 weeks tops, and at the time I saw him, I'd only had a couple episodes of tingling that didn't go away within a few minutes. Of course since I found out about this, it seems like new tingle has been popping up every day, and last night, it started happening in my calves/feet, which has never happened before. I actually got so worried that I almost went to the emergency room, but I took a Xanax instead and walked around for a few minutes, and that seemed to help.

I've been tested for auto-immune diseases, as my family has a history of Sjogrens and Lupus and RA. I've always shown negative on those tests. I've had my B12 and Vitamin D levels tested, and while I don't know what the B12 number was the last time it was checked, I was told it was rather high. The neuro tested this too, so we'll see what he says on Monday. My vitamin D level was 17 last time it was checked in February, so I've been taking 50,000IU of Vitamin D2 for the last 4 months. This is in addition to having taken the same dosage for 9 months before that, and my level was STILL only 17 in February. Granted there was about a 4 month break between the first nine-month dosage and the one I'm taking now, but still. You'd think it would've been higher than that. I've had a history of B12 deficiency and iron deficiency in the past, so I'm going to request that he let me know what those levels are when I see him Monday as well.

I guess I'm just wondering what I should do next. He hasn't really told me what kind of neuropathy I might have, and he only mentioned small fiber in passing. I'm wondering if there are specific things I should be asking him to test for, if he hasn't tested for it already. I have a long list of questions for him. Neuropathy doesn't run in my family, I've never abused alcohol, I've never had chemo, I don't have HIV, I'm not diabetic that I'm aware, and I've tested negative for auto-immune disorders every time I've been tested, which is several times. I know a lot of people never find out why this happened, but I'd like to give it my best shot since these symptoms are so new, and since I can still feel everything. The only kinds of toxins that I may have been exposed to are Levofloxacin and Cirpo (taken a few times in the last year, had bad reaction to Levofloxacin), and the treatment I had to do for H Pylori last year.

Sorry this got long, but I'm so confused and I have so many fears and questions. I feel like this is consuming all of my thoughts, and I can't do anything without worrying constantly about this. I know there are a lot of knowledgeable people on here who have been through this, so I'm hoping someone can point me in the right direction. Thanks for reading, and any advice or encouragement is appreciated!

Deanna