Idiopathic Small Fiber Neuropathy Research

My neuropathy definitely started with statins. Trouble was, none of the docs believed me. Not much can be done now. I’m not going to let some new fellow practicing neurology on me.

I don’t know what you are trying to lower, my guess is LDL. There are numerous non-statin drugs out there. Your Internal Medicine doctor will know. In re statins causing neuropathy, that would take a great deal of research, but I am sure your Mayo neurologist can answer that as well.

I’m in the severe pain group. I would be willing to get off statins if it would be palliative, reducing pain. Trouble is worrying about the consequences. Obviously, I sure don’t need a heart attack! So, I’m really interested in research and/or clinical trials on this; but reports here indicate not much to review.

You may not be missing much and further, be disappointed with the SFN ‘study.’ I had it a couple of years ago and all it did was confirm what I already knew - where the pain was and that nerves were dying for some reason. The results come after probing an area (my feet) with needles and electrodes for an hour. It was tolerable but not very comfortable and didn’t do much other than prove to the doctor what I had outlined.

Hmm, I did not know about alternatives AFTER using statins. Yes, it is LDL. Thanks for posting. Conventional wisdom, maybe hearsay was that once you started statins you had to continue them or increase an event risk. Recall President Bill Clinton doing just that, then making a public admonishment NOT to stop statins.🤷‍♂️

God help us all. I feel like I'm living in a 3rd world country regarding my entire dealings with the medical field etc.

I'm so fed and very mad that SO MANY doctors brush off so many patients complaints and their symptoms or have to be pushed into doing tests that can rule in or rule out a disease etc.

I'm just furious at this point. I will be traveling to a city about two hours North of my home in SW Fl to a Long Haulers clinic. I've about given up on Mayo in Jacksonville due to Mayo only have ONE neurologist that deals with Autonomic Nervous System issues and the many negative patient reviews mostly all saying the same thing about this one neurologist AND to top of off the seven hour drive. Gas and hotel costs etc I'm about to wash my hands with all this. Sucks. Tired of complacent or passive doctors and those who will NOT listen etc

I’m in the severe pain group. I would be willing to get off statins if it would be palliative, reducing pain. Trouble is worrying about the consequences. Obviously, I sure don’t need a heart attack! So, I’m really interested in research and/or clinical trials on this; but reports here indicate not much to review.

I think Bill was wrong. At least I've never heard that from two cardiologists I've seen, one beingbthe creator of the Calcium Score and who I wish I'd not moved too far away too keep seeing easily. A really good doctor and reassuring, positive but realistic, person.

P S One thing that a lot of people take is no-flush niacin. But a friend was on that and was in a car accident and doctors in the ER insisted that he must have been on blood-thinners as they had a lot of trouble stopping the bleeding. It was the ER nurse who asked about everything he was taking and told the doctors her husband had had a 'paradoxical' bleed after a small wound when on no-flush niacin. So just a heads up on the natural stuff that's been under-studied.

I used to live in Atlanta Georgia for many years but we moved back to where I used to live many years ago and that's Venice Florida. So I'm about 2 hours south of Tampa on the west coast of Florida but just trying to get up 75 and go all the way across highway 4 through Orlando is a nightmare all by itself and then having to get on 95 to head all the way up to Jacksonville Mayo Clinic when they only have one doctor Dr Cheshire that deals with autonomic nervous system problems and then to read so many repetitive over and over and over again negative reviews about this doctor and questioning why can't my neurologist here in Tampa do a small fiber neuropathy biopsy? So I pushed my neurologist and pushed him until he referred me out to another neurologist in Tampa that does small fiber neuropathy biopsies which I should have had this test 2 years ago. All these doctors just want to send you home even though you're begging them for help and telling them it's not all in your head and it's not anxiety yet they send you on your merry way and think that you can survive day-to-day today month after month year after year with debilitating frightening symptoms that come on out of the blue with no rhyme or reason and they affect you from head to toe like they do me get all these doctors just want to send me home and think I can live that way for the rest of my remaining life. That's insane. And I'm finally getting this biopsy done because I had a push and push and push my neurologist and the other neurologist in Augusta Georgia when I was living there 2 years ago he never did this test. So we will see what happens but I'm just fed up with what I'm seeing as a very lame nonchalant quality of care coming from far too many doctors lack of care etc lack of compassion lack of doing every test out there to find out what it is