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

[QUOTE=Tinglehand;1266858]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
Hi Bruce -

First, gapapentin takes time to build up in your system, so don't expect anything right away. Going off the statins takes a few days for the pain it caused me. The biggest reason people have neuropathy is being diabetic, which I'm not and your not - so there is another reason. My actual diagnosis is erratic blood sugar/pre diabetic - after years saying I was idiopathic after dozens of test at Mayo I said "Look when I eat something with sugar on an empty stomach I get tried and fall asleep". So they finally did a good ole glucose tolerance test - and I crashed big time. All my blood sugar test come out perfect. I am on the Keto diet, which is kind of a fad right now, prior to that I was doing low carb - no desert for a couple of years and saw some changes and when my son-in-law went on the Keto diet he convinced me to give it a try. You can read about it all over the internet. For me, it made a difference after about 2 months in my neuropathy. My cholesterol went down, my blood pressure went down, and I'm loosing about 2lbs a month even though I'm on Lyrica (gabipentin's big sister) Which is crazy because all I have done is gain weight since being diagnosed - as the gabipentin is really a weight gainer in side effects as well as Lyrica. I was very worried about the cholesterol with this diet even though everything I read said it doesn't raise it - but when you are eating steak, salami, cheese, etc - it was a worry!! But I had my blood tests done after about 4 months and my numbers significantly dropped. I told my neurologist what I was doing and he said keep going and we will check you again in 6 months. Exciting -- until I had this stupid flare up!!

The diet is basically very low carb - like under 30-50mgs of carbs a day. So I eat meat, dairy, eggs, a small amount of berries and lots of veggies and I can have sugar free products like Jello pudding or such when I am craving something sweet. I even found a low carb ice cream brand named Enlightened - which is made from a natural sugar substitute - which really has brightened up my diet

Neuropathy is a symptom of something like a fever is - so for me having this weird way I process sugar/carbs it helped me. I have a high stress life as you might have read in my earlier post, and that is a real factor in my level of pain too. Sending you my best wishes and come here often, everyone is so kind and helpful and yes good understanding company! Let me know if you have any more questions.
Tina:

Thanks Tina,

Thanks for your detailed response. I will look into the keto diet.
The gabapentin seems to be slowly helping, so I will continue as
Directed by my rheumatologist. It has only been about 8 days
I'm also looking into a possibility of a mold toxicity which I understand
Can also cause neuropathy. A mold detection company is coming out this
Afternoon for a quick look. I hope it is only mildew, but if not it may lead
Me to the root cause of my hand neuropathy issues. I will certainly post
Any findings even if not for a few weeks. Everything takes time!

Thanks again,
Bruce

What made you think to check for mold toxicity in your home? I’ve often thought about this myself, but don’t really have any specific reason to believe we have mold, just another item to cross off the list...

For several years I have been cleaning a section of my hallway ceiling and wall near the top for what I thought was mildew. After reading some stuff about mold, I asked myself if what I was cleaning might be mold and not mildew. I posted my issue on a local internet neighborhood forum and got someone who said they would come out and take a look. A brief walk through and they said I had dampness in the basement but no mold, just water stains. The hallway was a different story. They said that mildew usually doesn't come off with a finger swipe, but that mold does. The hallway was NOT mildew. I took a few swipes with a q-tip, put it in a Baggie and brought it to a local lab for testing. For $40 I found out that my sample contained 94% Cladosporium and 6% Aspergillus/penicillium like mold. The former is common in the air and on both live and decaying plants and is usually not harmful to healthy humans. The later can be more harmful in high quantity, but again is airborn and common and usually doesn't effect healthy humans. People with compromised immune systems can be effected with usually asthma like symptoms, rashes and other related issues. I don't think I was effected by cleanup, but I haven't ruled it out and I am more careful now with what I hope is my final cleanup. I have sealed off what could have been the source of my mold and now I just need to watch to see if it comes back. For info it was my attic access and a whole house fan that had poor sealing which was allowing hot moist attic air to be pulled into the hallway and accumulate near the ceiling in a dark hallway. A perfect invironment for mold to grow on the flat painted surface. Yes mold can grow on paint!

There are blood tests for mold, but rarely used since mold toxicity is kind of rare.
Not to scare anyone, but if you have a mold toxicity issue, the mold literally lives off the inside of your body and eats away at cells on organs and anything else it can find. Again, it is rare and you would have multiple side effects if this was happening to your body. It is just one more thing for people with neuropathy that have been searching for root causes for years and getting nowhere to rule out.

Good luck if you pursue this further. I was lucky I found someone to check it out for free. If you hire an inspection company it will run you around $600, but you will get the entire house checked along with air quality to get some peace of mind. They will advise you on how to cleanup anything they find which down the road could cost thousands if remediation is required. If you don't have any obvious signs of water damage or mold, I think you are probably OK to cross this root cause off your list.

I hope you can use some of this info I provided to further your search for the root cause of your neuropathy. If anything, it gives us something to do in our spare time and keeps that glimmer of hope alive!

Have a great day!