BDrake's Discussions
Gamma Knife~Dystonia Essential Tremor
Replied Dec. 19, 2008
Help Me Understan Dystonia
Replied Dec. 11, 2008
Myclonus or Myclonic Dystonia
Replied Jul. 7, 2008
BDrake's Page
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I am the same as you....I have my good spells and have stress and nothing happens.
ALWAYS if I exert myself in physio I have an episode. If they continue to work me I continue to have
episode after episode.
When I had a colonoscopy, no food being...
see the mistake the doctors make is saying that your disorder is "stress induced". stress and anxiety simply aggravate the disorder itself. im so serious im like floored that 12+ doctors couldn't diagnose my husbands medication induced dystonia in...
you are absolutely correct. my husband has gone diagnosed for 4 years. i KNOW that the 30+ medication cocktails they put him on did it. i just put a presentation together for his new neurologist, we will see him next week. let me know if you would...
you are absolutely correct. my husband has gone diagnosed for 4 years. i KNOW that the 30+ medication cocktails they put him on did it. i just put a presentation together for his new neurologist, we will see him next week. let me know if you would...
Tired...very very tired...emotionally, physically, spiratually, tired.
I was going to say that I didn't recommend Baylor, for the very reason you stated. I have no experience with the other two though. Good Luck!
~Becky
Elaine,
Your story sounds excatly like mine...only dystonia has now taken a toll on my marriage as well. We're still together but the burden is getting so heavy for myself & for him that we take it out on each other & the stress & frustration sho...
Comment Wall (10 comments)
- At 1:09pm on July 4, 2009,
freida may said… - Hi Beka we have not spoke for a while now. How are you doing. Better i hope. I want to wish you Happy 4th of July and hope the rest of the year is godd for you. I know you have cervical dystonia and i would like to ask you a question, since the Dr hasnot given mine a name, I ahve had ttrouble with my neck for yearsssssssssssssssssssss. Just thtought ir was spurs from a bad wreck, now my right shoulder and down my spine are killing me, i can not get any relief, Does this sound like CD TO YOU?
- At 8:10pm on December 24, 2008,
freida may said…
- Merry Christmas Becky to you and your family. I hope you have a wonderful Holiday and no problems with your Dystonia.
- At 4:33pm on December 22, 2008,
BionicKris said… - Sorry it took so long to "accept" you as a friend- I haven't been to my home page for a while. I look forward to reading your posts and answering any questions when I can.
Kris
- At 10:24am on December 10, 2008,
freida may said…
- Hi Becky, Just a note to say thanks for adding me to your friend list. I have just been DX with Dystonia but i have had it for a while with no name to call it. Dr thought it was caused from RA. Would love to chat and hear all about your Dystonia. I am trying to learn all i can.
- At 5:00pm on August 4, 2008,
rachelbates said… - Hi Becky, how are you?? i just found you on here and see that you about my age..........I'm 29 in October and you have Dystonia and have started a family.
here's my post on the website:
http://community.wegohealth.com/group/dystonia/forum/topic/show?id=2028394%3ATopic%3A20148
I'd really like to start a family soon and just wondered if you had any advice or anything at all!!
Best wishes
Rachel
x
- At 10:44pm on July 11, 2008,
karen said… - hi becky!!..well i have followed you and the others from our little myspace group..i'm excited about this new place and am looking forward to learning more about dystonia and hopefully helpful tips on living with it..
i hope this finds you doing better..take care and i'm sure i'll see you as we go from one place or another!! karen ;0)
- At 12:51pm on July 9, 2008,
Jen said… - Hi Becky, glad to meet you. You can check me out at http://www.caringbridge.org/visit/jenelle and http://neuronswithdystonia.blogspot.com
I'll see you around. -Jen
- At 2:27pm on July 7, 2008,
Ellen S said… - Hi Becky!
We're so glad you found the Dystonia forum on WEGO Health. There are a lot of great people here and the community is growing really fast. So much support and knowledge out there... if our docs rounded us all up they could learn a lot!
You mentioned you have Chiari malformation. I'm writing about Chiari for a Migraine article I'm doing. I would love it if you would consider sharing what you know about chiari sometime in the Migraine forum.
Let me know if you have any trouble navigating around. If I can't help you, I usually can at least find the right people to ask.
Have a great day!
- At 1:00pm on July 7, 2008,
luvslulu said… - Hi The Beckster!
Glad to see your wonderful face on board here! Now, we have two great places to go to that we can think of as our homes away from home. It doesn't get any better than that!
Hope your weekend went well,and that today you ae feeling alot better. What's this lil'One?? It took you months to figure this out? I doubt that! U still reign as our resident computer expert! Good morning to both of you, my dear great friends! Love you!
OXOXOXO
LiL;one and I will suffer thru this heat together.. OMG... I saw on the weather station that it is supposed to get down into the low 90's by this weekend! Now, how wierd is that??? Let's get out the sweaters!
- At 9:35pm on July 6, 2008,
Robin Wood said… - Hi Becky :) I'm so happy to see You ... welcome !!! If You have any questions You might want to ask Nana P, she got right in there and spiffed up her profile, she did a good job to ... it took me months figuring everything out LOL.
Profile Information
- In the online health communities I participate in, I'm:
- not really sure where I fit yet
- More about me (my health interests and reasons for joining WEGO Health)
- I am married. Have three children ages 9,7 & a. I first had symptoms of Dystonia in May 06. It wasn't until January 07 though that I first heard the word and had it applied to me. It's been a struggle and can't wait until treatment and knowledge is more wide spread so finding the help you need is easier.
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