4 ms·
I had discovered something similar. I've had some nerve issues after a medication. First, my physicians were in complete denial that it was impossible. Then, I
by avgDev 3y ago
I had discovered something similar.
I've had some nerve issues after a medication. First, my physicians were in complete denial that it was impossible. Then, I had to push them for tests. This includes Mayo clinic. It wasn't until I learned about neurological diseases and tests myself until I found the tests I needed. Then I had to search for a physician willing to listen.
Ended up finding a neurologist at a University who straight up agreed that due to my history of tests and not coming up with anything he is open to hearing what I think and ordering what I want as long as it is within reason. We ordered autonomic test and QSART(sweat test). My autonomic tests were unremarkable like I suspected but we found issues on the sweat tests confirming my self-diagnosed small fiber neuropathy.
I have then found other people having significant improvements from nerve supporting supplements, ALA, l-carnitine and high dose b1(which is relatively safe).
I also stumbled upon Pirenzepine, I met a chemist online who reversed his neuropathy with Pirenzepine. It is not FDA approved but available in Japan with a good safety profile. I want to try this next.
Later I discovered that there is company which is in phase 3 trials I believe with a cream with the main ingredient being Pirenzepine to treat neuropathy. In one of their studies they discovered that cream seemed to work systemically when it came to healing the nerves.
At this point my physician who is a professor is excited to hear from me. I told him I am debating obtaining pirenzepine because supplement and gabapentin offer temporary relief thus far.
The point is.....I would never receive proper diagnosis or suggestion for supplements from a physician unless I kept pushing and doing a lot of research on my own. I have seen many many doctors over the years.....Then as I expanded my knowledge I slowly began to notice that some doctors are clueless and incorrect(using outdated knowledge). It has forever changed my perspective on physicians.
- salad-tycoon 3y agoCould you share more information on pirenzepine? Maybe from the chemist conversation and/or a dependable Japanese source? Never heard of it, just looking into it now. > It has forever changed my perspective on physicians. Well, when all the administrators of healthcare systems laud how they practice strict evidence based medicine, it leads one to wonder what the additional benefits are and to whom.
- avgDev 3y agoHere is the company trying to get the cream to the market: http://winsantor.com/ http://winsantor.com/ I think this was a post by him, however, cannot confirm as the user has been deleted. https://www.reddit.com/r/smallfiberneuropathy/comments/attfxc/i_reversed_most_of_my_sfn/ https://www.reddit.com/r/smallfiberneuropathy/comments/attfx...