Margaret Suits

Your Replies

  • July 22, 2021 at 7:10 pm

    littoxfish, I think your idea is excellent. I struggle with all the aspects ou mention wanting to include in your support group. jim seems right on about the specific medical advise, the the  emotional and mental aspects must be universal to those of us with the isolating rare conditions. Hope the group has worked out for you.

    July 22, 2021 at 7:04 pm

    Hi all. Next month will be 5 years of going to Mayo, Rochester. I have Lewis-Sumner varient, and after being told in Montana where i live, that I had ALS, had to get the old second opinion.

    Dr. Sarah Berini, at Mayo, has been so incredibly helpful for me, as well as coming up with the corrcct diagnosis. Had GBS in 2005, and thought I was recovered. In 2014, Thenar muscle in my R.H. started to atrophy overnight, and my legs, particularly L., started getting weak. I was a professional musician, and the SLOW process of trying to get an answer, ended that for me. Dr. Berini has seen me through lots of up’s and downs, but slowly going UP. I take cellcept, IG every 10 days, and lots of pain meds. I’m able to teach still, and play piano for myself. Also, walk slowly. I recommend Mayo without reserve. Best to you!