Hi Jim (@jimmccarl) - that's a good question. I'm pretty sure genomic testing has to be done to tell whether or not you have the gene. Here's some information on National Institutes of Health site:

@lauries - this might be helpful for you also. I just found it and it seems to have a lot of good information and related links in the page.

John

Great find- that explains a lot.

@jimmccarl and @johnbishop. Greetings. I thought I would weigh in on the neuropathy discussion. I have not been following all the posts on this, but I wanted to share with the group my experience with this problem. I had been struggling walking close to a mile or even standing still for awhile when my feet would get numb and I felt I needed to sit for a moment. As I pursued trying to get answers to this problem, my GP ordered up several tests which in the end ruled out most of the "bad things" it could be, but no solution. That was not good enough for me and so I continued pushing for an answer. I asked my cardiologist if the statin drug I was on could be the problem and got the answer that we hear all the time in that it would be more likely muscle aches, but not the neuropathy I was experiencing. I decided with my GP that I would change to a different statin, but keep the same dosage. (Went to Simvastatin 40mg from Atorvastatin 40mg) and within a week there was a noticeable change for the good. I still have some and my feet seem to get cold easily which they did before, but I can walk several miles w/o any significant numbness. Hopes this helps, it sure did me.

My Neurologist is at the Missouri University in Columbia Missouri. He sent my blood to Washington University in St. Louis and about 5 weeks later it came back with positive (very high level, like 14,000) for the FGFR3 ANTIBODY. IT says on the report that this is known to be the cause of sensory neuropathies. It says "lgG vs FGFR3 normal is less than 3,000. It says "lgG in this serum binds Fibroblast Growth Factor Receptor-3. Serum lgG binding to FGFR3 had been associated with Axonal Sensory Neuropathies. Some patients have sensory ataxia or pain."

So there you have it!
Best regards
Darlene

You'll have to get referred to a neurologist for testing- that's what my husband had to go thru once his symptoms starting.

Hi @thankful, thank you for the information - it's great that you are pushing for answers. For too many years I just let things go and didn't push to find out why my feet and legs were going numb. After getting my diagnosis of idiopathic small fiber peripheral neuropathy I was on my way to trying to find something that helps me - I don't have any pain, just the numbness. I can relate to not being able to walk very far and also not being able to stand a long time or for that matter sit a long time. I also have polymyalgia rheumatica (PMR). In my research along the way I discovered that statins make neuropathy worse and can actually cause it in some cases. My primary care doctor tried to put me on simvastatin also but I told her I would work on my diet to help bring down the cholesterol numbers. She also tried to put me on gabapentin which only helps when you have pain with your PN. Here are just a few references I found on statins:

The implications of statin induced peripheral neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/

Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
http://care.diabetesjournals.org/content/28/8/2082.1

Medication Induced Neuropathy
https://link.springer.com/article/10.1007/s11910-003-0043-8

John

Very helpful- I need to get the numbers on my husband's blood work. It was also done at WashU.

Thank you @thankful for your info and it's good that you are finding solutions too. For me this is not the issue as I do not take any statin.
Darlia