Joel Fritzler - Thank you for sharing your story, need and "if it were only true".
Hope Mayo will help us understand.
Steve

I am sorry you were rejected by Mayo in AZ - I know the feeling as a headache specialist declined my case in 2020, instead saying I should go to a pain clinic. I rejected that outright as all that was known at the time is I didn't have MS, there was no large fiber involvement, and steroids helped control the symptoms.

I did my best to control my symptoms but that started not working so well back in November. I finally consented to see my primary care doctor in March (also at Mayo - have been her patient since before she moved to Mayo) and ask for one or more of LDN, medical marijuana, or high-dose steroids for an extended period of time. I was not looking for a consultation with neurology.

Before the appointment, I shared with her a paper that described my symptoms spot on (just to reinforce I am not crazy) and that spurred her to a) run some testing outlined in the paper, and b) suggest I needed a neurology consult again. I said fine but only if it is with Dr. Brent Goodman who is basically impossible to see - I at least wanted to get rejected by someone who deals with peripheral neuropathy. I was actually put on a waiting list and was surprised to get a call about an appointment open due to someone else cancelling. I took it. Dr. Goodman spent an hour-and-a-half during that visit and came to the same hypothesis that is in the paper I shared with my PCP.

Will he find the source of my neuropathy? Who knows? Will he come up with a treatment plan that allows me to still work? Who knows? In the end I am grateful he listened and wants to try an find the needle in the haystack which is all I ever wanted someone to do. I don't expect a miracle cure and assume I will have this pain until the end of my days but knowledge is key to understanding how to treat that pain, not just mask it.

I guess if you are still reading this, then the message is that even though a door might have closed, it doesn't mean it will stay closed forever, even if you aren't looking for it to open. I hope you find a good doctor, inside Mayo or outside of it. I remember there was supposed to be a good doctor in Salt Lake City, UT but never tried that option - I can try and find the name if you are interested.

-Aaron