myotopic dystrophy

Do you mean myotonic dystrophy?

Yea. sorry. This is so new to me. I have been told it's similar to muscular distrophy. I get it wrong all the time. But, yea, it's myotonic

No problem! Did you check out the link in my last post? It's a list of symptoms from the National Institutes of Health.

Yes I did and thank you. I only have problems with my muscles. No heart issues and no cataracts. I do not produce tears. Actually, I don't produce the proper water, salt, water mix that creates tears. I can't sit Indian style or cross my legs when sitting because one-my legs go numb and tingly, and two-when I go to straighten my legs, it takes a couple of minutes to do this. I have to slowly get out of bed in the AM, doing dishes is tough cause I have a hard time keeping a grip on them, and using a wash cloth or towel is hard. Typing isn't that bad but that's because my fingers are curled. I did have a muscle biopsy done and it showed signs of having it. However, my bloodwork does not show it. (Oh, I also wear braces on my ankles so that I don't sprain them.) The doctor that is "treating" me said that because I had the test done at one place and shipped to the Mayo Clinic, that the test could be wrong. She is doing a genetic test on me. I just don't have the energy I used to have and it infuriates me to no end. I have twin 5yr old daughters who I enjoy to the best of my ability and I hide a lot of the pain. That's when I really wipe myself out. Thanks for letting me vent and for the link. Kristie

Hi Kristie. I hear you. When do you expect your genetic test results?

I haven't gotten the script for it yet. SHe said it would take a month for the results. I'm not counting on it showing anythng though because my blood never does. THat is until the last possible moment. My gallbladder had to be taken out under emergency because my blood work showed nothing wrong. I didn't know I was pregnant with my twins until I was three months along. No thanks to my bloodwork. Right now, I don't feel too confidant that the dna will show anythng which puts me back to square 1 and feeling like everyone is looking at me like I am a hyperchondriac. I hate it!!!!!!!!!!!11

Well, take heart in knowing that you are simply someone seeking answers. I know that there is a lot of stigma to illness, but keep looking and asking. Does your insurance allow for a second opinion? Perhaps you could find a more compassionate doctor who can help diagnose you?

this is my fifthteenth opinion. I have seen 15 doctors since all this started. First it was rheumatoid arthritis, then lupus, sojourns disease, multiple schlorosis, charco-marie tooth type 2, then, because they didn't know (and still don't) fibromyalgia. I have had 3 emg's done, a muscle biopsy, bloodwork out the wazoo and the only test that shows inconclusive or anything at all is the biopsy and all my biopsies show some kind of unknown fibrous cells or tissues present. If the doctor can't find anything, he/she gives up and just says "treat the symptoms". I want to feel better and be who I was. I want off disability and be able to go back to work. THis isn't me. I used to dance for 15 years. I was extremely active. I was a go-gettter. NOw, I barely can get out of bed in the mornings. I hate it. I am going to the best hospitals in the US. If they can't figure it out and figure out why my bloodwork won't show anythng, but my biopsies do, then what? Sorry. I am just so frustrated.