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Unknown Cause or Idiopathic SFN

Neuropathy | Last Active: Jan 7, 2020 | Replies (120)

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@rwinney

Hi. I took time to read back through your history of posts and I have a better understanding now of your situation. You and I are very similar. I have Small Fiber Poly Neuropathy and was told from a B12 deficiency (219). My b12 levels are normal now, however no help to my nerves so I might as well be idiopathic....the damage has been done. Neurologist says maybe if lucky my nerves may regenerate 2-3 years. I think that is big farce. My symptoms continue to progress and parallel yours except my damage is neck and up back of head, across backs of shoulders, down arms and into hands (right side being worse), both full length of legs and feet (right foot and left calf being worse). Aching in legs, cramping in legs and arms, burning skin, vibrations, shocking pains, limited walking and many other things. It truly torments me. Thank you for sharing your story and success with CBD. I'm on Lyrica CR, Duloxetine and hydrocodone 5mg. Hydro has not been working well anymore so I'm applying for my medical marijuana card and will finally be making a change to cbd/thc. I also receive weekly lidocaine infusions which are limited in their relief as well and disappointing and inconsistent overall. Plasmapherisis would be next option and I'm told IVIG is off the table because Medicare won't cover it. Thanks for listening and again for the helpful information.
Together in perseverance! Be well.
Rachel

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Replies to "Hi. I took time to read back through your history of posts and I have a..."

Hi Rachel
I have a hemiplegic migrain from more tham 10 years and it causea sever pain and stiffness in my neck, shoulder and back head and i was taking topamax tab 100mg . Due to a side effect between it and Cannabis . The Neuro change the topamax to Botox injection on my head , neck and shoulder . The Botox helps me in the stIffness of them . That is make me thought this symptoms is related to the migrain not to the SFN . The other symptoms are my right hand and both legs from my toes up to my both knee cramping , burnnig and baker cyst in my right knee cause joint locking and pain . Now my left hand starts numbness and tingling.
I understand what we are taking are a pain killer or analgesic only but there is no cure for this disease . I am really sorry to say that .
Thank you