Connect
← Return to Recently diagnosed with Small Fiber Neuropathy - so many questions
Discussion
Recently diagnosed with Small Fiber Neuropathy - so many questions
Neuropathy | Last Active: Mar 8, 2022 | Replies (78)Comment receiving replies
Maveric09
Hi I had skin biopsies to confirm SFN. it is progressing from toes up shins. My neurologist now, insurance wouldn't pay for my prior neurologist, she doesn't know that's much about SFN. I talked to hear after my own research about the autonomic neurological effects of SFN. She agreed that it is likely i have it too which affects BP, heart, etc.
I feel alone in my pain but have a great Lyme disease doc. All day I developed the polyneuropathy from Lyme and 3 co-infections.
I was paralyzed 3× back in 2000 but recovered each time with therapy. But the pain stayed which is constant.
I am so frustrated that no one has effective treatments. I am allergic to Gabepentin and Lyrica made me gain ton of wt.
Have they tested you for Lyme? I was a Park Ranger we think when I got it.
I have asked my neurologist for another EMG/NCT as its seems spreading. But that's months away.
Few of my docs gave heard of SFN and ant understand the severe pain.
Replies to "Maveric09 Hi I had skin biopsies to confirm SFN. it is progressing from toes up shins...."
Connect
Thank you for sharing your story, @trish1 I have been checked and am negative for Lymes. While I do have some of the more common SFN symptoms like tingling in my hands and toes, for me, it's really been the autonomic dysfunction that's been quite challenging such as dizziness, chest pain, heart rate and BP fluctuations. In this regard, I've not been able to find the appropriate physician or care team to put their collective hats together and come up with a coordinated treatment plan. My cardiologist says "well, your heart is fine so go talk to your neurologist." That's not very helpful.