Made It To Mayo

Well, I thought I would write a few words to provide an update on my trip to the Mayo Clinic.  We arrived in Rochester Wednesday evening, came to the hotel, ate at Mac’s and settled in for the night.

On Thursday and Friday, we had our testing and visited with the consulting neurologist.  The advice was to stop taking the Cytoxan and to start an aggressive treatment regimen with IVIG.  From everything that I read and from the first hand experiences from people that I know online who also have a paraneoplastic syndrome, this is the most promising treatment option.  I hope that it can at least make me stable and maybe get back a little of what I have lost.  Of course the reality is that I will never return from the “new normal” but I would like to find a way to slow down the gradual deterioration of the past year.

The Mayo neurologist also recommends rehabilitation so I guess I will try a formal PT and OT program again.  I have lost a lot of weight and perform a home exercise program that my PT prepared last year already but I think doctors believe that exercise cures everything.  So, I will do my best to include this part into the treatment program as well.

I will post more tomorrow.  One of the bad things about the trip is the fact that I caught a cold.  So, it has me down a little  I hope to do a little sight seeing before I go home.  I will write about the food up here too.  Some really good restaurants.

And, I got to meet a real 5th cousin – another proud Scots-Irishman McReynolds that is a descendent of Robert McReynolds, my SAR patriot.

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About mcreyscope

Retired / disabled survivor of Stage IV melanoma and paraneoplastic syndrome.
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