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.

Statins...
Do you have actual heart risk factors , or are the statins just a "preventative " measure due to cholesterol numbers?

We have some threads on the newer statin information.. just a few...
Statins
Dr. Hyman, MD's take on statins today:

[QUOTE=Jo*mar;1266793]Statins...
Do you have actual heart risk factors , or are the statins just a "preventative " measure due to cholesterol numbers?



Thanks for the info. My cholesterol was around 250 and is the heredity kind. I have no heart issues other than a RBBB diagnosed with a stress test years ago that I was told is nothing to worry about. I'm on 20mg of simvastatin and my cholesterol levels are around 170. I hope this answers your question.

[QUOTE=Tinglehand;1266806]250 isnt a terrible number...i think i would stop the statin, the side affects in your case arent worth it and try a natural way to bring down your cholesterol if you want.

My cholesterol is about the same as yours and I do not take statins. Every time I try to take them my neuropathy flares up - within days. I met with my neurologist at the Mayo Clinic and told him about my issues with statins and he said that one of the side effects of statins is neuropathy! So I watch my diet, especially carbs - and after 6 months my cholesterol dropped like 40 points. For me (the cause of my sensory neuropathy is erratic blood sugar) watching what I eat lowered all 3 types of cholesterol that they measure - including the one that is suppose to be family history and it doesn't change. Go figure - diet made a huge difference for me. It turned out I was eating WAY too much fruit - which quickly turns into sugar.

My dad had a stroke and my mother congestive heart disease and so this was a big worry for me - I'm thankful I found something that works for me.

One thing I have found in my 18 years of having Sensory Neuropathy is you just keep looking for help and it does come in many forms - diet, exercise, sometimes medication, sometimes help at this sight. Good luck!
Tina

Thanks for you story, misery loves company!

Are you pre-diabetic or diabetic? I tried a strict diet once and it didn't help my bad cholesterol, but shot my triglycerides up. I soon stopped and went back on the statin. I never had the neuropathy until just 3 years ago, but it has been persistent in both hands and starting up the back side of my forearm. I'm 66 now so I have gone a long time with no neuropathy problems. I just started with gabapentin three days ago and have noticed very little change. I am also stopping the statin as of today and hope to see some results over the next few months. I have never had sugar issues and have been fairly active for my age. I may be slightly overweight by docter's standards, but I am big boned and strong which skews the standards.

I am curious what your main diet now consists of since fruits and carbs seem to be off the table for you. I'm willing to try different things.

Thanks again for you response.

Bruce