← Return to Call for Mayo Clinic Leadership in Healthcare for Neuropathy

Discussion
Comment receiving replies
@aaroncush

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

Jump to this post


Replies to "I am sorry you were rejected by Mayo in AZ - I know the feeling as..."

Aaron
Grateful - Thank you for sharing
A story and message all, including our children, should hear.
The healthcare system we give to the future must overcome the challenges you, and so many, share.

Thank you again -- "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. "

We can and must help open doors for people, us too.
Please continue sharing so all can hear!!
Steve

Aaron, thanks for the info and, yes, if you can find the name of the SLC doctor, I’d appreciate it. I have relatives up there so I could stay with them.

I emailed my Neurologist today requesting an increase of my Gabapentin dose to 1,200 mg., which I know is still low for some folks on this discussion group. I haven’t seen him in over a year so I don’t know if he’ll increase my Rx without a visit; which would be a waste of time and money. If he doesn’t, I’ll ask my PCP.

Thanks again, Joel