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Idiopathic Small Fiber Neuropathy Research
This coming June, I will make a journey to the Mayo Clinic in Rochester, Minnesota seeking answers to my diagnosis of idiopathic small fiber neuropathy. This will be my last major effort in getting some kind of relief. I was diagnosed about 5 years ago (skin biopsy) and have tried gaba, Lyrica and Cymbalta. I am currently taking 300 mg of gaba ( got as high as 2,400 but it’s useless) and 60mg of Cymbalta. I retired from the pharmaceutical industry after 40 years, and was 62 when diagnosed. My major complaint is burning feet, especially the bottom of my feet. I exercise routinely.
From my research it appears that there is not a lot of research on the etiology of neuropathy, but more on palliative treatment, and not much of that. Mayo is considered the #1 neurology hospital in the country. Does anyone have any first hand information as to what research is taking place there, if any?
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I sure understand your perspective on doctors and research. By way of causation I posted recently about statins and alcohol consumption being linked. Further, I have a Comorbid malaise which is neurological and may contribute to SFN. It is CFSME, the vernacular being Chronic Fatigue Syndrome, which trivializes the disabling disease. You may want to look into it since you’re getting all these anxiety responses. The largest forum is phoenixrising.me forums. BTW, 7 hours from Jacksonville sounds like you may live in Atlanta, my home? I’ve heard the same about the clinic in Jax and decided not to waste time and money when the main center is reputed to be the best. ‘Hope these comments are relevant.
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
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2 ReactionsHi Debbie, can you research fully the other neurologist and, if you strongly believe s/he is better, just force the change? You are the consumer in this transaction after all.
Most of my doctors are with Cleveland Clinic but I retained an excellent cardiologist from outside the CC system. She and my PCP share any relevant test without any difficulty. I've also switched specialists within CC one time because the first one was too dogmatic and authoritarian for me to want to deal with. Not a team player, in a sense, and I'm not a good candidate for that approach to medicine.
Thank you for posting about how you are navigating the shoals of a really difficult situation with, well, grace. The body-building background sounds as if it gives you extra insight into how best to help your body as well.
I had a serious back injury years back and the TENS unit was a great help. It didn't counteract the most severe pain, but it did help take my attention away from it. And helped me fall asleep, along with, for some reason, Baroque music. I could adjust the TENS unit to almost be in sync with the music by tweaking amplitude and periodicity of the TENS stimulation then lower the intensity. It sounds odd but having those three little controls was about the only control I had over pain, or pain awareness, so it was a blessing.
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1 ReactionI have researched and have one selected outside my current system to pursue if a new one in-system doesn't get approved. I too like to see all my records linked on one site, but would be fine with a new Neurologist sharing separately with my PCP. To be honest, my current Neurologist hasn't done anything that's useful for my other doctors to see at this point, so nothing would be missed. Like yours, my current neurologist's style doesn't work for me. I need communication, evidence of listening, and at least short explanations. Coaching and/or confirmation of things would be nice. I almost feel sorry for him; I don't think his computer skills are up to par, and in today's fast paced office visits of 20 minutes, I lose half of his time because he's fumbling around on his computer and having difficulty finding and navigating through my records. So he can't talk and listen while toggling around. He loses things, forgets things, and his office visit notes are so inaccurate when I read them. I just don't want to personally suffer because of his inability to keep up with the times. He needs an assistant to help him, but I know healthcare systems wouldn't be able to afford that...
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1 ReactionMy 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.
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1 ReactionThanks Callalloo it does help I also had a SCS implant the paddle version which covered my entire pain areas but the paddle came loose from my spine and I needed emergency surgery to take out with Covid going on emergency surgery was 3 weeks later . After that Incident I opted out to not having that happen again as my trust went out the window to place it back in and the wait time it could have really damaged a lot more so I feel lucky it did help me some but the options just wasn’t enough for me after 10 months also my battery was rubbing my spine when I laid down left side and right side could be I had no body fat not sure I’m still in pain daily but with God , family etc I’m hanging in there and not giving up
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1 ReactionVitamin B3 ( niacin) the prescription strength is niaspan. Ask your doctor about starting at 500mg. No prescription required. Niacin may cause flushing in face not harmful just brief weird feeling. My doctor told me to stop statin because it was harmful
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2 ReactionsI tried repatha an injection non statin but side effects were the same muscle pain so I went back to statin still feel it may be cause my neuropathy
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1 ReactionYou 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.
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