Hello everyone,
I have been reading this forum for the past few weeks (you all are so supporting and knowledgable) and I thought I would introduce myself and maybe get some helpful tips for my next Nero visit Tuesday.
I’m a 28 year old American living in Toronto with no real neurological problems in my family with the exception of my grandmother on my father’s side who had rheumatoid arthritis since she was 8.

It all started about 4 months ago when I woke up one morning with my toes tingling, this then quickly turned into my feet with a cold feeling. I went to the local walk in clinic who said that my shoes must be too tight and to not worry about it. (Even though I swore up and down I don’t wear tight shoes ) This continued for another week and I went in again and finally got a trip to the neurologist, who then sent me off for my EMG / Nerve Conduction, which turned out negative and had the following blood work done:

Normal Results: Glucose Serum Fasting (took twice), Creatinine, eGFR, Sodium, Potassium, Chloride, CK, sTSH,Cholesterol, Alkaline Phosphatase

Abnormal Results: Urate, Ferritin (317, took second test was 271), Vitamin B12 (442, took second test was 776), Hemoglobin (177, took second test 172)

After these results the neurologist said their was nothing he could do and didn’t see anything out of the ordinary. It was after this that I decided to take a trip to the Jack Miller Center in Chicago, and hope that I could get some answers. (Unfortunatly this wasn’t the case.)
In the mean time the cold, turned to pain, and had gone completely up my leg to my behind.
Upon arriving at the Jack Miller Center, I met with a very nice doctor who was the one of the heads of the dept and went through the following tests.

Normal Results: CRP, Sed Rate, Hepatitis C, SSA, SSB, Lyme EIA, IPEP, Paraneoplastic ABS, MRI of lumbar spine, cervical spine and brain, Vibration, Prorioception and temperature.

Abnormal Results: ANA 1:160 (which he said was fine as the results tended to run high at this particular lab)

They suspected small fiber neuropathy, but sadly enough they couldn’t find anything and I went back home to Canada. (It seem if you don’t have Diabetes or have had a history with alcohol then you are pretty much out of luck)

All was not lost as I was able to get another apt with one the best Neuros on Neuropathy (so I am told) in Canada. Meanwhile the pain has now moved behind my arm and I wake up in the morning with large “gurgle” sounds in my lower intestine, which tend to pass a few mins after I get up. (Could this be a sign of “automatic” nerves being attacked?) Up until this time I was pretty calm about everything since it seemed like I might be in some pain for life, but it wasn’t life treating…. Now I am really freaked and saddened that my autonomic nervous system might eventually be crippled by this. I still am looking forward to having kids and living out the American (well I guess Canadian now) dream… I am very worried that this all may be in jeopardy.
(Do people die from small fiber neuropathy??)

I really want to capitalize on my next visit and was wondering if anyone else my age has been in this situation and what other things should I have the next neurologist check / ask questions for? (I am in the process of filling out the sheet sent by LizaJane already)

Some things that came to mine for me was…
Could I get a check for Vitamin B1? (The other two neurologists said this really isn’t a major cause of PN… but my friend Google tells me different.)

Should I be concerned with the ANA test? 1:160 seems high considering some people are diagnosed with autoimmune problems at 1:80.

To be proactive, would it be worth getting a Vitamin B12 shot? IVIG? (Expensive I know, but from what I have read people with small fiber neuropathy have benefited from it)

Thank you so much for taking the time to read this, I hope we can all eventually find some relief for this depressing and debilitating condition.