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Old 05-23-2018, 09:04 PM #1
Summerfun Summerfun is offline
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Default SFN Research

Hi,

Here's a link to a brief Q&A about current research. Often members have asked if anyone gets better. In the answer to the 5th question in the attached, "What are the Implications of this Discovery", it states that some people have transient neuropathy following infection or vaccination and they do improve on their own. It doesn't say how long it takes though. My SFN (confirmed non length dependent by skin biopsy) started in January 2014 after 3 vaccinations in a 5 month period. Doctors would not say it was caused by the vaccines though, it is idiopathic. I was taking 2,700 to 3,300 mg gabapentin per day. In June of 2017 I started to cut back very slowly. By mid-November of 2017 I was off gababentin completely. While I still have some residual sensations it is manageable without medication. I don't know for sure what caused it or if the pain will stay away but for now I am keeping my thoughts positive. I hope this information provides others hope that it can get better.

A (Small) Cause of Big Pain | Proto Magazine
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"Thanks for this!" says:
pinkynose (05-24-2018)

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Old 05-24-2018, 10:59 AM #2
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Quote:
Originally Posted by Summerfun View Post
Hi,

Here's a link to a brief Q&A about current research. Often members have asked if anyone gets better. In the answer to the 5th question in the attached, "What are the Implications of this Discovery", it states that some people have transient neuropathy following infection or vaccination and they do improve on their own. It doesn't say how long it takes though. My SFN (confirmed non length dependent by skin biopsy) started in January 2014 after 3 vaccinations in a 5 month period. Doctors would not say it was caused by the vaccines though, it is idiopathic. I was taking 2,700 to 3,300 mg gabapentin per day. In June of 2017 I started to cut back very slowly. By mid-November of 2017 I was off gababentin completely. While I still have some residual sensations it is manageable without medication. I don't know for sure what caused it or if the pain will stay away but for now I am keeping my thoughts positive. I hope this information provides others hope that it can get better.



A (Small) Cause of Big Pain | Proto Magazine
Summerfun I am glad that you have a good idea of the cause of your disease. I agree with the article. If more people had the dx of SFPN then it would be looked at and studied by more people. My 1st neurologist didn't even want to write that I had "symptoms" of SFN. Instead he used the word "sensations." My pain management doctor had the guts to give me the dx since it had been 3+ years with the same chronic burning. I don't hold out much hope that anything will result from this article in my lifetime, but it does hold hope for younger people.
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Old 05-24-2018, 01:27 PM #3
Shak2388 Shak2388 is offline
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This is good to know and gives me hope
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Old 06-01-2018, 01:07 AM #4
laxative_mess laxative_mess is offline
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Gives me hope
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