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@artscaping thank you for reaching out. I finally got diagnosed with SFN last week. I had been diagnosed with neuropathy, but last week (after 4 years) was the first time I had heard SFN. I have been through most of the major nerve medications, e.g. gabapentin, cymbalta, etc. I am currently on 150mg of Lyrica 3 times a day and I take tramadol for the pain. At night I use trazadone for my sleep. I have had nearly every test done related to blood and otherwise. I have had MRIs, spinal tab and the skin biopsies. My SFN has been so severe that I just went out on disability and I am going through all of the same steps again. I have an MRI of my brain scheduled in 2 weeks and my skin biopsy in 3 weeks. I've spoken to over 50 medical professionals over the past 4 years and don't really get any answers. I 100% believe that my neuropathy started due to HSV 2 exposure. After doing a lot of research, I believe there are a lot of people that suffer with the same issues I have and continue to get ignored and/or misdiagnosed. There are a couple promising clinical trials for a therapeutic vaccine for HSV 2. I truly believe that is my only hope for some sort of relief (similar to shingles vaccine). My latest attempt at some relief was ketamine treatment. It did nothing for me and I don't recommend it. I'm looking forward to contributing to this group and I hope we can all find some relief. BTW, I spoke to the Mayo Clinic several times and was denied even an appointment. I'm not sure there is much more they can do, but it was a bit frustrating..
Replies to "@artscaping thank you for reaching out. I finally got diagnosed with SFN last week. I had..."
Good evening @blaircrossan. I so appreciate your follow-up. It does appear that you have been tested and tested and tested. My neurologist also made me have an MRI. The report was all he found on my brain was normal aging evidence.
Also this evening, I would like to ask you if your first name is Blair. I have a wonderful nephew named Blair and his vision pops in my head when I see your posts.
Regarding those 50 medical professionals. That seems overwhelming. Was there any consistency at all?
Regarding, the Mayo Clinic, I am sorry that your request for an appointment was unfulfilled. How did you apply? Online? or by paper submission? When you spoke to the admission personnel, was there a reason given? I also applied twice and was not accepted even though I am a mentor. Some departments have more demand than others. Did you by chance, apply for Internal medicine?
I do know that Mayo medical providers can and do contact your current doctors if a consultation may be helpful. There are also Mayo extension facilities in and around other states. Would you like a list of the locations?
May your life be at peace.
Chris
Sounds like you went through many meds. I have SFN too but doc said best guess is from taking Prograf/Tacrolimus immune surpressant for 18 years at that time. I had a liver transplant in 2000. Then again in 2017. In 2018 the pain started in my feet. Now I take Pregabalin 100mg 2x day. Plus 3 years ago I got a Med Marj Card in my state and now use CDB and THC at night before usual bedtime. It helps me sleep and it still in my system in the morning so during the day the previous nights doses are much weaker but still helping.
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I believe my SFN was caused by the shingles vaccine. I do hope you find some relief