Your Type of Dystonia and Current Treatment..

A few people have written to me asking me if I would create this post to help clarify and make it easier for Forum members ( Yu- Wooo...Over 110 members now ! ) to learn about each member's type of dystonia and current treatment.
So, lets' try to keep this simple- in explaining your Profile..
Include -
Name if you wish
Age
Gender
Type of Diagnosed Dystonia
Current Treatment List ONLY.
Number of years with Diagnosed Dystonia ONLY.

I will use myself as an example for others to take the lead in posting...
Feel free to post your online site, myspace page etc...for easy acccess for all...

beka

Tags: diagnosis, dystonia, members, neurology, profiles, treatments, wegohealth, years

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Replies to This Discussion

Permalink Reply by bentnotbroke on October 26, 2008 at 4:27pm: Laurie,
54
Female
Segmental (CD, right hand tremor & writer's cramp) Compensatory Scoliosis
Intensive Physio, massage
1200 mg gaba pentin @day, 2 mg clonazepan 2 day
26 years since diagnosis; ▶ Reply to This

Permalink Reply by beka on October 26, 2008 at 5:27pm: I must say this is turning into a nice quick profile page...
I applaud all of you who have contributed. It gives a great quick giude to those new to the group.
Please add your profile, if you are NEW !

beka; ▶ Reply to This

Permalink Reply by Rosemary on September 4, 2009 at 8:16pm: Rosemary
49 (nearly 50)
Female

Generalized (inc. OMD), 8 years (diagnosed 2001 but have had for decades before)

Exercise (swim with snorkle, bike with neck brace, walk with neck brace)
Massage therapy (very knowledgeable therapist)/Chiro (very experienced)
Meditation/breathing exercises
PT (a lot)
Cymbalta
Remeron (light dose- helps w/sleep)
Lyrica
Baclofen (going off- does not seem to help, seems like made legs worse). Perhaps will try Cogentin; ▶ Reply to This

Permalink Reply by Karen on September 5, 2009 at 4:53pm: Karen
56
CD on right side but has gone to left side and upper middle back in last 6 months
1 mg clonazepam
14 years; ▶ Reply to This

Permalink Reply by Racersprincess94 on September 28, 2009 at 3:48pm: Aimee
Age: 22
Gender: Female
Diagnosed Dystonia: dopa- responsive dystonia
Current Treatment: Sinemet 10/ 100 3x a day, and an anti- nausua medication; would LOVE to start exercise again but not sure at the moment of reactions (any ideas???)
Diagnosed: offically September 2009
Facebook page: Aimee Tallant; Racersprincess94; ▶ Reply to This

Permalink Reply by Deanna on September 29, 2009 at 10:04pm: My doctor won't let me exercise. He said it would make it worse.; ▶ Reply to This

Permalink Reply by Rosemary on September 30, 2009 at 2:53pm: Really? What kind of doc? Not even in a warm pool?; ▶ Reply to This

Permalink Reply by Jenn on September 28, 2009 at 4:20pm: thanks whomever resurrected this thread!

My Profile:
Jenn
Age: 29 Female
Dystonia Type: Writers Cramp---> Leg ---> Cervical ---> Hemi Generalized Dystonia (dyt11 unconfirmed)
Treatments: Klonopin, Botox, Alcohol (not at the same time :P) and REST
Years dx: 3.5 ( w/ primary diagnosis of writers cramp) 1/2 year w/ diagnosis of generalized

www.whoisjennmarie.com/dystonia; ▶ Reply to This

Permalink Reply by onmom on September 29, 2009 at 8:11am: Chris
39
Female
Cervial Dystonia
Currently waiting for treatment
Diagnosed 1 month ago; ▶ Reply to This

Permalink Reply by Deanna on September 29, 2009 at 10:03pm: My name is: Deanna
Wife, Mom of 2 and Grandma of 1
Generalized Dystonia
Meds: I am taking Artane, Cymbalta
Offically diagnosed:9 months
Considering and researching: DBS (lots of questions about it); ▶ Reply to This

Permalink Reply by Rosemary on September 30, 2009 at 2:50pm: How long have you had? Have you had for a long time and just not diagnosed?; ▶ Reply to This

Permalink Reply by Rosemary on September 30, 2009 at 2:50pm: Does Artane help? How to you handle side effects?; ▶ Reply to This

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