this is from Happy's post, didn't want to hijack
Thanks for sharing, you are always so open and caring. In regards to you progressing. Do you think that you had this for awhile, when you were being treated for sojorns? Meaning that maybe your progression has been slow if you have had this for years and will continue to be.
My twitching is alittle like yours. When I lay in bed and my legs are against each other or the bed, I feel them firing off. I have seen only a few times of movement. When I sit outside with kids, I am always lookimg at my legs and dont see constant movement. I think that is the one thing that keeps me going.
I do agree about weakness first. I feel your weak when you cant do the things you use to and I cant. My docter says it is because I have not used my muscle and they are out of shape. I think that is lame. I have periods in my life where I have been sick and not worked out for extended periods of time. When I went to work out, I could do it but maybe not finish. WHen I try now, I cant even go 5 minutes. IN my kitchen I noticed it too, I use the same big pans I always have ( I love cooking and having a glass of wine) and I have noticed the pans seem to be heavy like my wrist is gonna give out or I have to use 2 hands.
anyway, sorry to ramble.
best wishes to us all! Happy~~~~over the next 2 weeks just over focus on your kids, that helps me.
April, I agree that some of what is going on with you seems similar to me. About the weakness, the big pans in the kitchen is an excellent example. I used to do a lot of cooking, but that changed just due to my kids all being on their own now. I just don't handle them on a day to day basis. Just yesterday I was making salad for Don and me, and had sautéed some steak to put on top, and found I couldn't hold the pan (as in at all!) over the salad bowl to slide the meat out. Its that kind of thing, unexpected new limitations, and I feel like I've been blindsided. I've not really ever tried to test my strength, probably as so much of the medical focus with me has been on my throat and mouth. I haven't really paid attention to it.
You're correct that when we see a doctor and they try to test our strength, they don't really have an optimal way to judge how strong we are compared to how strong we have been. They do know what would be in a normal range though.
I honestly don't know when I first started getting sick. Wright and I have corresponded about this, (me trying to reason that maybe I'm not bulbar onset). I was treated for Sjögren's for about a year. I did/do not make the antibodies. I only have dry eye and dry mouth, and salivary gland biopsy's only show minor focal inflammation that could be found in anyone if enough samples were taken. The rheumatologist down at Hopkins explained that to me. He said they do biopsy's to cadavers and find some inflammation in people that had no symptoms. So, whether my dry problems are due to cranial nerves, or whether its a milder form of autoimmune, no one seems to be able to determine.
The onset for me was insidious, everything that has been affected so far has been so gradual that I can't pin down an exact time. I remember time frames, when people first started remarking about my voice, etc. (which was about 22 months ago now) When I went for that modified swallow test a few months ago, one of the big wake-up calls was that it isn't normal to have a good bit of food left in ones mouth after swallowing. I'd gotten so used to it that I wasn't even thinking about how it didn't use to happen. During the test, even before we got to the stage where I had to eat some cookie, I was aware that all of the barium I was supposed to swallow wasn't going down, and it was like I was trying really hard because it was a test, trying to do it right. I could feel the liquid pooling under my tongue as I swallowed, and really, that was the very first time I consciously realized that liquids and food were not moving down like they were supposed to. I knew I choked sometimes, and knew that occasionally things tried to go up my nose, but never thought about that part.
I think though, that your age is in your favor, and that you had such a sudden onset. However, from what you write here, you're still seeing a progression, and whatever it is that is causing it really needs to be identified. Its reassuring that you live where the doctors you need are accessible to you. I'm really hoping that the biopsy comes back with something definitive .
It seems that even though your symptoms aren't identical, you, Crystal and Sammantha have much in common, and each of you are daily in my heart. I am thankful that if I have to be sick, that it is now, after my kids are grown.
Let us know when that biopsy gets back!