Hi everyone,

I have been dealing with small fiber neuropathy in my hands for almost 3 years. I have tried various things and seen various doctors only to be told it is most likely not auto-immune and the symptoms are treatable with neurontin. I just started with the neurontin generic so no change has been noticed yet.

I'm not a doctor, but 9 years ago I had severe muscle breakdown in my hips along with shoulder issues and went to my regular doc. He said I was getting older and should expect the decline. I disagreed and he eventually agreed to run some blood work. To my surprise and his I was told to immediately see a rheumatologist because indicators were showing up for Lupus, RA and other auto immune diseases. I had been on pravastatin and read the side effects and way down the list was a false positive for RA. The rheumatologist diagnosed me with RA and treated me with Plaquenil for about a year while being off the statin. All returned to normal. As a side note, RA doesn't go away but did for me.

Now I have been on a different statin (simvastatin) and have had the hand numbness, tingling and sometimes burning sensation for close to three years. I don't have The RA indication in the blood work, but the antibodies are high and I believe an auto-immune issue has been triggered and think that the Plaquenil could suppress the immune response and maybe the small nerves can regenerate over time. The rheumatologist doesn't agree and wants to just treat the symptoms and run some more detailed blood work.

I would like to get to the root cause, even if I am told it is permanent nerve damage. My NCV and EMG tests have shown that my main nerves are fine and that I have small fiber neuropathy. My understanding is that the nerve issue is caused by an auto-immune response. Am I missing something here?

I am on a list to see nerve specialist but can't get in until April of 2019.

Has anybody out there experienced similar issues and especially if they are also dealing with statins? My personal feeling is that unless I can suppress the immune response in my body to get it back on track, that I will continue with the neuropathy and never reaolve my issues.

If the neurontin works, it will only be treating symptoms which I suppose is better than nothing. I'm only 66 and would really like to get to the bottom of this. I am not in pain, but am tired of the 24/7 numbness, tingling if there is a treatment out there that may put me back on track.

Thanks for any specifics limited to hands from anyone reading this post.