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 beka on October 6, 2008 at 6:39pm: My Profile :
Beka
Age 42, going on to 43.
Dystonia Type : Dysphonia ---> Cervical Dystonia ----> Generalized Dystonia ( Non- DYT1 gene type )
Treatments : Klonopin, Deep Brain Stimulation
Years DX : 24 years

beka
www.care4dystonia.org
www.wegohealth.com Dystonia Forum
www.myspace.com/dystoniamatters
www.youtube.com; ▶ Reply to This

Permalink Reply by Lope on September 6, 2009 at 4:54pm: Penny
Age: 46
Dystonia Type: Adult Onset Generalised Dystonia, Blepharospasm, larygenal, cervical, oromandibular
Treatments: Tetrabenazine, Baclofen
Years DX: three; ▶ Reply to This

Permalink Reply by ramona on October 6, 2008 at 8:34pm: I'm next!!

My Profile:
Age - 46
Dystonia type - adult onset generalized
Treatments - Stalevo, Deep Brain Stimulation
Years DX - 2 1/2

Blessings
Ramona; ▶ Reply to This

Permalink Reply by BDrake on October 6, 2008 at 9:04pm: My Profile:
Age- 28 yrs
Gender- Female
Dystonia type- cervical dystonia, writers cramp-generalized dystonia (non-DYT1 gene)
Current Treatment- none currently prescribed..left over pain pills, skalaxin, wine..all have minimal effect, if any.
Years diagnosed- 1yr 9months; ▶ Reply to This

Permalink Reply by Lizzy Holder on November 20, 2009 at 1:23am: Hi BDrake!
How do you feel about your current treatment? If you can't get to a movement disorder doc or aneurologist..why don't you take some info from the computer about dystonia and teach your doc.
Skalaxin didn't do anything for me, I have cervical, but I do take Klonopin and have Darvocet for pain. That wine isn't going to help you. Hope you get to a doc and get something ordered to help you out!
Lizzy; ▶ Reply to This

Permalink Reply by Karen B on October 6, 2008 at 9:21pm: Hi,
I am replying on behalf of my Daughter Kelby
Age 16
dystonia type: Lower limb, Generalized Dystonia? Waiting on Genetic testing results to come back--Now problems writing at school all day?--eposodes of jerking of her dystonic leg
Treatments: Artane, several botox injections, Tetrabenazine, more botox--nothing helped, screened and approved for DBS, cancelled after pre-op- just completed a sleep study(?) will get results on Thursday
Years DX: 1 year 5 months
Karen B for Kelby
www.caringbridge.org/visit/kelbybalch; ▶ Reply to This

Permalink Reply by lexiesmom on October 15, 2009 at 8:48pm: why the canelation? Sleep study why? my 14 year old is looking at having dbs just started all the work up she need to fail 3 more meds for the insurance to ok the surgery.; ▶ Reply to This

Permalink Reply by Karen B on October 18, 2009 at 10:14pm: Hi Lexiesmom,
cancelled because toronto Western said "conversion Disorder" s . Any doctor who has looked at this tends to agree that it's conversion.. We met with a conversion specialist in London Ontrio last week. He said that 85% of patients who come to him with a conversion dx. usually do not. He feels that he is 99.9% sure my Daugheter does not have conversion-and is willing to fight our case with our Movement Disorder Specialist. this has been a frustrating road to travel. We were told to see Phsycatrist's, we did, the could not find a triger. We were told to speak with child physcologist's , we did they could not find a triger. We were feeling very much alone in this Dystonia world, until we found this Dr. last week. I will let you know how we make out--good luck with your daughter as well. Nothing worse than watching your child suffer
Karen B.
PS. Sleep study was ordered after cancellation of DBS-Nothing abnormal found, Botox, Artane, Tetrabenazine, Tested Negative for DYT1, now on Baclofin for spasms!!; ▶ Reply to This

Permalink Reply by Tom on October 6, 2008 at 9:55pm: Tom
Age 37
Cervical Dystonia
Years DX- 7
Treatments
Botox (5 times - never helped)
Baclofen and Klonopin (moderate effect - tapering off both)
ST Recovery Clinic (currently 80% symptom free since being on program)
My story- http://www.spasmodictorticollis.org/Stories_TS.cfm
www.deflame.com (nutrition website devoted to reducing inflammation with proper diet and supplements. Not a Dystonia specific site, but many have been helped with the info to reduce pain associated with their dystonia); ▶ Reply to This

Permalink Reply by FlaGirl on October 7, 2008 at 12:43am: Age-54
Female
Dystonia of left foot
Treatment of Mirapex which doesnt seem to help, Botox injections which slightly help for about 2 months, Tried Tegretol and helped for about 2 months also.
Diagnosed 1 year ago; ▶ Reply to This

Permalink Reply by Robin Wood on October 7, 2008 at 6:09am: My Profile:
Robin
Age: 47
Dystonia Type: Blepharospasm ---> Writer's Cramp ---> Feet Dystonia ---> Cervical Dystonia --- > Generalized Dystonia (non-DYT1 type)
Treatments: unresponsive since onset
Years dx: 11 yrs

www.myspace.com/lil_and_precious2
www.youtube.com/user/ResilientLilOne; ▶ Reply to This

Permalink Reply by bkaren46 on October 7, 2008 at 9:23am: Karen
Age: 47
Cervical Dystonia just diagnosed late fall-early winter last year 2007/08
Treatment: Botox, Flexeral, Percocet when really bad.; ▶ Reply to This