Originally Posted by JimD

I have been reading this forum for a few months now and just wanted to get my story out there to maybe find some help. It has been extremely frustrating when every test I take shows nothing but yet my symptoms persist. I am grateful on one hand that I seem to be otherwise healthy, but I almost wish we would find something wrong so at least I might be able to correct it. It started out of nowhere back in September. I woke up one morning and felt my toes slightly numb and frozen feeling and tingling from my feet to my knees. Prior to this I felt no symptoms and had been a completely healthy and very active person. I tried to ignore it for a few days thinking it would go away but it never did. Went to my doctor and she had some bloodwork done, all of which was normal. The feeling persisted for another 2 weeks with burning feeling whenever I had shoes on. I was freaking out thinking I had MS, being that a cousin of mine does. I went to see my first neurologist and his initial exam and spine MRI’s did not reveal anything. He said to wait another week to see if it would go away and if not he would send me for an EMG/NCS test. After that test was normal, he pretty much gave up on me so I went to another neurologist who has been great so far. She sent me for extensive blood work checking for everything.

One of the three abnormal results was low vitamin D, but it was 29 ng/ml and the standard range is supposedly 30 – 100 ng/ml. The second was my Vitamin B6 level which was really high at 127.2 ng/ml when the standard range is 2.1 -21.7 ng/ml. This may have been skewed because about a month before, I started taking B-Complex with 100mg of B6 in it thinking it would help my condition and I only stopped it two days before the test. I had only been taking a multi-vitamin with 3mg of B6 in it before all of this started. Once I learned that B6 Toxicity can cause PN, I stopped the B-complex and the multi-vitamin. I will get my B6 levels checked in the next week or two to see if it came down. The third was a slightly high number on the 2 hour glucose tolerance test which could indicate prediabetes. I now avoid sugar, started eating healthier and upped the exercise.

My Neurologist sent me for a QSART test and that was normal. I have been taking Gabapentin since November and am currently up to 1500 mg a day. I don’t know whether it is working or not because I still have my symptoms. The one thing I can say that my neurologist found to be the opposite of normal SFN symptoms, I get total relief when I am lying down in bed after about 15 minutes. I usually don’t feel any discomfort at night and feel perfectly normal until the minute my feet touch the ground in the morning. Over the last four and a half months my symptoms have been pins and needles, burning, freezing feeling, numb feeling, sore achy feeling, all in both feet, all of which happen at various times. Sometimes just one at a time, and sometimes two or three at a time.

I also take:
5000 IU Vitamin D3 (Once a day)
2000 Micrograms Methyl B-12 (Once a day)
1000 mg Acetyl L-Carnitine (HCI) with
600 mg Alpha Lipoic Acid (Once a day)

I am going to start Fish oil this week. I am getting very frustrated as my symptoms are not getting any better. Is there anything else I should be taking? Any comments or suggestions about this would be a great help!

I have learned a lot from this site so far. Especially that I am not alone with this. Nobody that I know including my family, friends, or co-workers have never heard of anybody who has this and that can be frustrating.
I just had a second MRI today which was of my thoracic spine. Not expecting any answers from it.