Update on doctor appointments:
If I wouldn't have been restrained and probably arrested, I would have kissed the neurologist who is the new muscular dystrophy doctor. He was wonderful and amazing and I've never ever ever met a doctor so human! The exam table was very low to the floor and there were no chairs left in the room, so for about 30 minutes he squated on the floor so he was eye to eye with me. Very impressive. He said that he's sorry that other doctors have blown me off (his words) simply because I don't fit into what they know. My genetic testing had come back negative for the type of CMT that 90% of my family has but no one ever took it to the next step to find out what it is then, just called it CMT and brushed it under the rug. He said that as a physician he owes it to me to find out what's going on and to come up with a treatment plan. He said based on all reports and testing and his strength testing and neurological testing, I have some type of hereditary neuropathy, but what kind is unknown. He said it because it doesn't have a name doesn't mean that it doesn't exist, it means it hasn't been found yet. He ordered MRI of brain and neck to make sure the facial numbness isn't from a pinched nerve, he ordered a pulmonary function test to make sure my lungs aren't affected because I am wheezing, he ordered 6 tubes of blood drawn because the arthritis and thyroid issue are auto-immune related and he wants to check other things in that area. He also ordered new braces for me because mine are breaking. Basically what all that means is someone cares and will put effort into helping. I was so relieved, I cried. I also had to meet with a physical therapist and an occupational therapist. The PT noted how little strength I have in my hands and also noted that when I sit I lean to the right, so she gave me some postural things to do, I got a really long talk on self-esteem (because she told me to do this in front of a mirror and I lost it and said I can't look in the mirror) and she told me that every time I do the thing she showed me, I have to smile because I have a beautiful smile. The OT showed me some ink pens that will help me write smoother and steadier and will be heavy and fat enough. I left there and just sobbed. It felt so good to have someone care and want to help.

Yesterday's doctor appointment was kind of a waste because he was going to order a pulmonary function test, but the MD doctor did that so he has to wait for those results. He wanted to give me an inhaler but because of my heart rate going so high, he didn't want to. I had to have a chest x-ray and then follow up there. He was very nice and spent about 40 minutes going over health history and issues and what not.

So all in all it went very well. I still am mourning my previous active life, but now there's hope that even though I'll never get it back, I may actually have some relief from the pain.

Thank you all for your support and for encouraging me and helping me.