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← Return to Small Fiber Neuropathy
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Neuropathy | Last Active: Aug 30, 2023 | Replies (105)
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Hello @bruces and @diknzn. I started noticing that my fine arm hair, seemed to just disappear on me throughout the last year. I was diagnosed with SFN in 2015 and Autonomic Neuropathy in 2018. The symptoms @bruces has described, pretty much match the ones I have been battling (OH in particular). It has been very challenging and causes me anxiety, due to the many back problems I have. The neurotransmitter that you had implanted, is that the SCS device or something different? Thank you all for sharing. It helps so much to know I am not alone with the many problems that I do my best, to work through each day.
Replies to "Hello @bruces and @diknzn. I started noticing that my fine arm hair, seemed to just disappear..."
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Sorry for the delay in getting back to you @teetee7. The neurotransmitter is through St. Jude. It is the model 3660 Proclaim 5 Elite IPG. It has been over one month now and I can honestly say it has improved my pain levels significantly. The procedure was quite simple. As an outpatient, I was in and out in around 90 minutes.
Like others, I have been suffering the complete gamut of AN symptoms since 2013. From the beginning, I have had intermittent symptoms. One day my OH keeps me from getting out of bed and the next day my BP is steady at 100/70. Without question, the bad days have outnumbered the good. Until about 30 days ago.
I awoke that morning feeling more clear headed then I had been in years. I told my wife that for the first time in recent history, my world was not spinning. In fact, the extreme constipation, urinary issues, OH, severe dry mouth and eyes, etc... all felt better. I thought that I was about to have the best day in what seemed like an eternity.
To my surprise, that good day has turned into 30 days. I am experiencing almost total remission from my AN symptoms. The SFN is still in full force but for me it has been the AN symptoms that have made life not worth living. Add this remission to the improvement from SFN related pain due to the neurotransmitter and I feel human again. I do not know how long this will last so I am enjoying every single day as much as I can. I only hope that other sufferers of AN will someday experience remission from its life altering symptoms.