Idiopathic Small Fiber Neuropathy Research

I have all these symptoms and many other neurological type symptoms for almost three years now and many specialists have no idea what to do and most all try to blame it on anxiety BUT I know it is NOT anxiety causing all these daily and relentless Neuro type symptoms.
I've finally pushed my Neuro Dr to refer me out to another neuro doctor in Tampa FL to finally do a SFN biopsy since my neuro Dr does not do them.

Either my symptoms are from a virus I caught in Nov 2019 which I believe was Covid OR maybe it's from this LOOP recorder planted in my left chest area OR could it be due to the Metaprolol heart meds I've been taking for 30 years now??

All these specialists I've seen, millions of dollars in testing of all kinds YET no real answers.

I was on a one year wait list to see a Mayo Dr of Neurology in Jacksonville FL. Dr Cheshire (even though many patients like me who have already seen this Dr gave him poor reviews) the day before I was supposed to make the seven hour drive to Mayo I became sick and tested positive for COVID (again) so I had to cancel my long awaited appointment.

It does concern me though that the Mayo Neurologist in FL has gotten so many poor reviews by many patients who are suffering like I am yet they went to Mayo to see Dr Cheshire and they were not happy with his attitude and comments made at them.

I'm soooo fed up with so many doctors blaming these debilitating symptoms on ANXIETY and quickly prescribing these darn antidepressants.

I’m going to look at the site @runnergirl. I too think we must speak up. I am less frustrated though about this whole thing since I’ve joined this Mayo forum. I no longer blame my personal neurologist for the diagnostic, research, and cure-finding that the whole discipline of Neurology has chosen not to further. I do, however, find him not capable of communicating, not helping to understand the situation, not making non-drug related suggestions to help sustain or improve quality of life as bad as it’s become, and just not showing compassion at least for what we’re going through and how we’re trying to stay positive and want guidance on how to make the best of it (not depression pills). For that, I have asked my PCP for a new neurologist referral. She previously kept talking me out of it because she’s not sure the grass will be greener, but I need my medical team to make me feel positive.
Last week I asked my Neuro for a Podiatrist referral to help fit me with orthotics or shoes to help me walk better and more properly, as to help reduce the leg, back, and hip pain I get from not doing so. In the exam, with a trainee in the room, he pointed to HER and told her to look at how I’m developing hammer toes. Would you believe I left my 6 month visit with him without a Podiatrist referral?? My PCP made the referral for me when I saw her for my physical yesterday, and I already have a Podiatrist appointment for next week!! I so want to get my gait improved and am rejoicing at this opportunity!
Now the sad part. My PCP and I agreed it would be ideal to keep a Neurologist in our same medical system, as I have about 7 other doctors and lab centers in the system and it would be convenient to have all records in the same system to share. Apparently it takes a Supreme Court trial and a lot of paperwork to justify why I want to change to a different Neurologist in the same system, especially one 15 miles further away from me….. So, if my reasons for needing better teamwork, not feeling we understand each other, and feeling I need better organizational and communication from my Neurologist aren’t good enough, I may not be granted a new Neurologist. I would then have to transfer my Neurological care to a different healthcare system, which would certainly be ok, but I would be terribly disappointed with this major major healthcare system I use. It’s not like I’m leaving my hairdresser for the one who has the chair directly beside him/her - we did pick one in a different office. But, oh well…

Good morning. Hang in there everyone maybe one day it’s been a journey for all of us and boy has it been from all the different test , spinal cord stimulators the meds the list go on . I was on the search for a cure know matter what 3 years Into this journey a failed surgery etc . My neurologist sent me to get a spinal tap I knew I had hereditary SFN from biopsy but I knew I had a lot more going on then SFN , after this procedure and weeks pass I finally get my results . Not only did I have SFN and I also PN which I kinda knew that and Spinal Arachnoiditis which is explained my the pain that never shuts off
the it’s like having pain cancer but there is no end to it you just endure it day in and day out . The up side even though I go through this daily is now I have a diagnosis I know there is no cure for any of it . But with this my Neurologist was able to take a more aggressive approach to my condition . I still have to take Gaba
4800 mg a day NI’s Trig for spasms and uncontrollable muscle jerks , and Hydrocodone at very high doses this helps some and least I can sit in my wheelchair at the dinner table now say a prayer and eat a meal with my family I can now take a 30 minute ride that’s not much to say but I’m living a little I’m ok with that under the circumstances. My routine daily is to contract the muscles even though I can’t walk and my use my hands our not steady I fight … I bought a stimulator like they use in a chiropractor office very similar it’s had a bunch of tape electors.I place these on each leg and each arm and back 30 minute intervals 2 times a day and stimulate and contract those muscles so I don’t loose them essence it’s like working out . I was a body builder for 20 years and competed and taught Jujitsu so In theory I knew I couldn’t be at this level ever again because I have no feeling in my legs nor do I feel hot or cold I still have to get those muscles to work or I would loose them so stimulation was a last ditch hope for me and if anyone is reading this it’s works start slow . Sorry for the long post I see a lot of folks on here with the same or similar conditions , I say to you be positive it’s hard but think positive never give up on you period you our the most important part. Seek the best you will have down falls it’s just the journey there is light at the end . Find something YOU enjoy seek it and just like Nike slogan just do it … even if it’s hurts you feel better afterwards trust me . Stay positive even through the pain and be best you can and do t be afraid to try new things if you fail at least you tried and in your mind and soul you’ll feel better because you tried .
Again I’m sorry for the long post God Bless each and every one of you and god touch these folks that our in time of need that our in pain lord and give them the courage , strength and passion to reach out and do the impossible lord thank you everyday for the blessing in Jesus name Amen 🙏🏻
Regards Chris J .

Hi 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.

I intend to ask my cardiologist if there might be an alternative to statins on the assumption that they might be largely responsible for this blinking neuropathy. Maybe there’s an analog drug with a different chemical structure? Of course there are likely risks to consider - maybe unknown. Any thoughts?

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.

I intend to ask my cardiologist if there might be an alternative to statins on the assumption that they might be largely responsible for this blinking neuropathy. Maybe there’s an analog drug with a different chemical structure? Of course there are likely risks to consider - maybe unknown. Any thoughts?

I intend to ask my cardiologist if there might be an alternative to statins on the assumption that they might be largely responsible for this blinking neuropathy. Maybe there’s an analog drug with a different chemical structure? Of course there are likely risks to consider - maybe unknown. Any thoughts?

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