Quote:
Originally Posted by hopeful
Hi Susanne,
Thanks for the information. I doubt I have CMT. The only thing I have that you mentioned is extremely high arches. It has actually been a problem for me. When I wore heels I always got a 1/2 size bigger so my arch would touch the shoe and most of the time that didn't work. I never was really clumsy until I got SFN. I am starting to find myself tripping up the stairs a lot.
As I said, I was just going to forget about finding a dx. Actually for the past year or so, I have just searched for pain management.That is how I eventually started IVIG. I am just worried about the muscle pain. I really didn't think that SFN caused muscle issues. My neurologist told me mine was nonmylinated fibers.
I can't imagine what you went through if your kids were young when this happened. Mine children are all grown. The youngest one is 23. I didn't get SFN until she was 18.
Could you reccomend any of the books you read? I think I am going to try and find a neuromuscular doctor in PA. If not then I might return to Hopkins. I am on a list for a doctor at hahnemann hospital but she has a waiting list in the double digits so I might have to wait for a long time. I'll keep looking around in the meantime.
At times my grieving seems awful but most of the time I hold it together. My family is wonderful but I don't tell them a lot. My husband is terrific so he hears a lot of it but I don't even tell him everything.
Thanks again!
hopeful  |
My 5 children range from 13-29. I have homeschooled all of them, except the second youngest, whom we let attend school starting in eighth grade. Last year was his senior year and I taught five sections of English at his high school to try and help out- it is a small private school and the English instruction had been terrible. The hardest thing about it was getting up, showered, made up, and dressed up, but it was rewarding. My classes were scheduled in the morning so I could go home and take a nap! I was so relieved when it was over. It was really tough by the end.
We still have three sons at home. I do most of the laundry and all the cooking, but little else. My symptoms didn't really get debilitating until about four years ago, so I didn't have young children.
Sick and Tired of Feeling Sick and Tired by Donohue and Siegel was my favorite, also How to be Sick by Toni Bernhard, which is a little flaky but inspiring.