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I have recently found that accepting your new reality, who you are now, is easier for the person with DRD than it is for those around them. To have the response to my diagnosis by those who gave it to me, and those I gave it to (genetically) be "you…
You can get herpes in the lower parts from oral herpes (cold sores) depending on the type of sex you practice with your husband, so it may not be a malevolent source, as many people carry oral herpes, and if he had something as simple as a cold sore…
I have definitely had diaphraghmic dystonia. It is terrifying. Forunately, I only have it on one side of my body, but the frightening part is that fluids build up in your lung, and that hurts. I've since been put on ldopa and it stopped, but before…
This group is moderated and hosted by Beka Serdans, RN, MS, NP, founder of Care4Dystonia.org.
Comment Wall (2 comments)
- At 2:51pm on August 20, 2009,
Ellen S said…
- Hi Greenie - Thanks for introducing yourself - it's great to meet you!
I see you've found our fabulous Dystonia group here - one of the most active online groups dedicated to information and support across the board for this mysterious disorder. It's run by our own Beka Serdans of Care4Dystonia.org. She's a nurse practitioner with Dystonia herself. This group is so fabulous - just ask any question you might have and you're sure to get a response.
There is also the Migraine group where many of the best Migraine Health Activists frequent. I don't know of many others with Dystonia, but I know there are many with Dystonia who also suffer Migraine and other headache disorders. One of the most frequently diagnosed headache disorders with dystonics is called Cervicogenic Headache. This happens when disorders of the neck/back/spine cause disturbances that result in headache pain of varying types. I've had issues with this myself - very painful indeed.
My dystonia is responsive to Sinemet, though I've not been diagnosed as "dopamine responsive". At my last visit, my neuro thought it was probably part of a "syndrome" that includes metabolic, autoimmune and headache issues. He's now moved his practice several hours away and I'm really struggling and having to deal with finding a new neuro who is VERY familiar with all of these issues - a difficult task at best!
- At 9:40am on August 13, 2009,
Lisa said…
- Welcome to WEGO Health greenie!
What brings you to our growing community of Health Activists? I love to see new faces joining the community! It's great to see you jumping right into groups and discussions!
I encourage you to check out some of our other Groups and join any that may peak your interest. Groups are a wonderful place to ask questions, join discussions, and engage with others who have similar interests. My personal favorite is the Women's Health group - feel free to join, it's an excellent resource!
Discussion threads and blog posts are other great ways to get your questions answered while introducing yourself to the community! You may also be interested in connecting with Ellen S. - she's an excellent dystonia resource in our community.
I look forward to hearing from you more!
Stay well :)
Lisa
Profile Information
- In the online health communities I participate in, I'm:
- a Mom/Mr. Mom (I’m here for you)
- More about me (my health interests and reasons for joining WEGO Health)
- Segawa's Dystonia
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