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Small Fiber Neuropathy: Book Recommendation
Neuropathy | Last Active: Nov 25, 2024 | Replies (67)Comment receiving replies
Good morning @greenacres. I wondered the same thing. And then I moved to MN and had all new providers. The first thing I was asked was....do you have a diagnosis? Not only that but where was the biopsy taken and what were the results. That information can tell how depleted your nerve cells are in a defined sample. Mine was .09 which indicated the severity of my SFN and from that what can be predicted to present an issue that needed attention.
When the numbness and pain began to increase throughout my body.....abdomen, skull, thighs, etc. there was evidence to back it up. I understand the biopsy can be from different areas.
Since I am from the "knowledge is power" group.....it meant a lot. Faster responses from providers and more understanding by the patient meant better and more targeted MFR (myofascial release therapy) as well as more research materials.
Hope this helps.......how is your husband doing? And you?
May you be safe and protected from inner and outer harm.
Chris
Replies to "Good morning @greenacres. I wondered the same thing. And then I moved to MN and had..."
@artscaping Hi Chris. One other thing and you've might have already told me but do you know if your SFN is hereditary or autoimmune related? I know you mentioned you've had lots of surgeries and had a fall.
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Good morning @artscaping. Thank you for your thoughtful response. I'm glad that the biopsy helped you understand what was causing your numbness and pain. It also sounds that knowing that you have SFN has helped you find ways to manage your condition better.
I've looked into MFR therapy but there appears to be only one provider in the area that is trained in the Barnes technique and that practitioner is still an hour away. We do have a Hypervolt (percussive therapy) which offers some temporary relief.
We are both doing well. His PN started the end of 2017 and joining this group has been a huge advancement in understanding his condition better. I'm now in the acceptance phase, as is he but always on the lookout for ways to manage the pain. Recently added the F&M (neuropathy topical) drops to the mixture and that does seem to bring temporary relief by decreasing the level of pain a couple of notches. He also started taking the R-ALA and is having to work his way up slowly as @johnbishop suggested since it definitely causes stomach distress.
May you be safe and protected, healthy and strong,
Michelle