Sorry to hear of your condition. It's horrible to have to see so many "experts" who ultimately can't help. I'm a 61 year old man who's also considering the Mayo as my last hope. I'm curious if you or others are going through some of the same thoughts as me regarding if it's really worth going to the Mayo.

Over the last year and a half I've had ever-increasing loss of fine motor skills in my right (dominant) hand. Can't easily write, use a fork, tools, etc. I've also got carpal-tunnel-like symptoms - numbness and tingling in several fingers and elbow pain. About 12 years ago, I had carpal tunnel surgery and that cleared up things, but the symptoms eventually came back. Cortisone shots in my wrist helped, but eventually wore off and, since the durations shortened between "recovery", I stopped getting them. I've had the carpal tunnel symptoms so long that I've gotten used to them, but the loss of fine motor skills is really frightening.

I saw tons of specialists in the Seattle area who couldn't diagnose me and the ultimate conclusion was to go to the Mayo. (Auto-immune diseases like MAMA were considered and I was treated with IVIG infusion, but that didn't work.) My neurologist here and those who arrange appointments for the Mayo neurologist I should see said that, after reviewing my records, the doctor will agree to meet if he can truly do something. I was also told that, after seeing the doctor and doing whatever was essential, I'd be told what treatment would be recommended and I could do that back home. (You or others get those two conclusions too?)

So, I'm scheduled for next month and the trip there naturally won't be cheap. Plus, my wife thinks that I haven't thought through everything and that risky, experimental or low-percentage treatment will be the recommendation. The Mayo online patient site shows my appointment with the tests the neurologist wants me to have while I'm there. Many if not most are the same tests I had over the last 6 months (MRI, EMG, others), so I'm pushing back that I don't want to repeat the same tests just to give Mayo money. I'm now awaiting a response from the neurologist about this and am starting to get uncertain if going will be the ultimate solution for me. I'll only want to do procedures or treatment that have been effective for those who have the same thing I do.

I don't want to go on blind trust and invest time and money to repeat the same tests in the hope that this'll turn out right. Are you or others stuggling with the same issues of repeated tests and uncertainty about the outcome?

Jump to this post