Talk about a mover and shaker, Beka, Way to go!!!!! Now that this has gone to press it's hard to say how much we can acoomplish thanks to you. I want to thank you for fighting for all of us. I've had similair issues in my field which is also medic...
I just wanted to share some information regarding genetics and dystonia in person's of the Jewish faith. If there are any members here on the board that are members of Hadassah, which is the largest Jewish women's organization in the United States...
Hi Nancy was just reading your post about the article about Jewish people with dystonia and treatments, could you please send me a copy so I can pass this on to one of our support group members, I feel she would be very interested in it. She doesn't have a computer or I would have you send it directly to her, she's very dear and likes to know as much as possible about dystonia and would probably like to know the Jewish connection.
Thanks Thorns
At 1:52pm on September 10, 2009, Nancy Muller said…
Hi Karen,
I'm always happy to advocate and share my knowledge and friendship with everyone. To reasearch dystonia in general, that includes them all go to this site, that of which I'm on the board of directorts and hold high esteem for their founder, she has a totally informative site. Go to care4dystonia.org. But basically cervical dystonia involves the neck primarily. It's a chemeical imbalance in the brain and the brain sends the wrong messages to the nerves which sends the wrong messages to the muscles which make them spasm, it makes your head shift, turn, tilt, twist and basically does what it's not supposed to. There are many forms of dystonia, cervical being one. Check out the website and it will give you more info.
Thank you, Nancy - I'm sure I will enjoy your friendship.
I don't know anything about cervical dystonia? but I see dystonia mentioned quite a bit on this site -
I"m intending to do some research.
Interesting....
Hi Nancy, i've just found this website today and have posted my first post. i'm recently diganosed with Cervical Dystonia at the age of 28. My husband and i are desperate to start a family, my specialist isn't very supportive, he said there is plenty of time for that!!! AHHHHHHHHHH!!!!! we have already been waiting for 2 years due to me having Chronic Fatigue Syndrome.
Do you have any experience or stories of women with CD coming off of their meds to try for a baby?? I know that it is going to be very hard, possibly one of the hardest things i've had to do but i'm soo determined. I just want to get as much info as poss!
hope to hear from you soon.
Rachel
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Profile Information
In the online health communities I participate in, I'm:
not really sure where I fit yet
The online health resource I contribute to most frequently is:
More about me (my health interests and reasons for joining WEGO Health)
I am very involved with support and education for people with Cervical Dystonai. I write for a quartly newsletter and have been published in a book written by my former neurologists. I was a former President of National Spasmodic Torticollis Association. I was a former Registered Radiologic Technologist and back office assistsant in orthopedic offices, but had to retire because of my medical issues. I have two kids a boy and girl and four grandsons.