Dystonia Neuro Movement Disorder

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Comment by TJD on October 21, 2009 at 9:06pm

Has anybody else ever experienced care with a neurological chiropracter. I would really like to know. I am going to this type of chiro and seems to at least offer some relief. He states that he can keep the dystonia from getting worse and even reverse the effects I have so far. He seems to help but I would like to know if I should be seeking other care as well. I asked this question before and nobody answered. Thought maybe I was posting things wrong. Can't find many answers from Dr.s so would like to hear something from all of you.

Comment by Canary3 on October 20, 2009 at 10:22pm

Dear Robin. Living in the now,so very important. I have limited ROM of Lft. should,arm and have been living in fear of Rt being effected soon. But after viewing your blog,you have inspired me to keep pushing harder, and harder. Daily, you try to keep one step ahead of your muscle spasms,which in it's self is exhausting,and yet you still inspire us with your beautiful art. All I have to do is view your blog and I'm out in Ariz. with you near your beloved lake. Thank You

Comment by chyvonneb on October 20, 2009 at 11:57am

Thanks to the link to http://www.dystomag.com. It looks interesting.

Comment by beka on October 20, 2009 at 6:11am

Read Robin Wood's blog on "Where she has been ! " Inspiring for all.

Link :http://community.wegohealth.com/profiles/blogs/since-ive-been-gone-an-update

beka
Mo - check out my answers to you.. JoeK. can also help in answering about DBS.

Comment by Lene on October 19, 2009 at 11:10pm

Congrats to you learning what your dx is. I am sure that takes a little weight off your shoulders. I know I felt so comfortable with my neurologist and she has done a great job straighting my head. It laid on my shoulder for along time. However, little by little up it came...like a balloon being inflated lol. Now I deal with pain, pulling twisting, head and scalp pain and that wonderful tremor..
Mo, did he suggest to you anything for the tremor as far as meds go?

Happy for you and I will pray for you to make the right answer for you. Lene

Comment by Mo on October 19, 2009 at 6:49pm

hello all and checking in and to answer beka's ?....

the drive to socal (southern calif) to see dr. young was about 6-7 hours. was it worth it? hell yea!

the first day much rain and fog... going home was sunny.

I visited with dr. young for 1.5 hours.

If I havent mentioned this b4 here, I will for first time or again (if I have)...

I belong to several online groups dealing with neuro, mainly ET and Dystonia...

I the feel I got with some many posts I have read and/or replied to was that a neursurgeon and neurosurgery seemed to me to be more valued in and regarded much higher based on my experiences with just the movement specialists and neuro world as a whole... in other words i thought much more highly of neurosurgeons and surgery industry with only a few posts I had seen compared to the hundreds of movement disorder specialists posts... my faith in neurosurgeons and opinion is much higher.. despite I had never had the opportunity to meet with one...until last week....

I was right in my assumption.. I feel that neurosurgeons HAVE to know more... several of my long time questions could not be answered until Dr. Young...

He was thorough, smart, listened as well as he spoke... etc.

As many of you here know my anger and frustrations after 26 years on and off dealing with neuro industry has been rather high... and rightfully so.. i feel my feelings are validated... why? cause when i thought they were wrong, they were... so much time, money etc wasted imo....

i have essential tremor... familial.... not dystonia....

i have been offered dbs and dr. young the fence right now with gamma knife... i will have to go back on another consult for that one if i feel strong enough on it...

it isnt an easy decision... if i go forth with anything surgery wise it would be next year.... dont want to cut into the man's x-mas and new year's... ;)

beka.. was dbs worth it despite u having troubles with getting programmed?

did you fear dbs? was the surgery part of it not as bad as u thought?

mo

Comment by beka on October 19, 2009 at 3:30pm

Any news about your visit with Dr. Young - Mo ???
beka

Comment by beka on October 19, 2009 at 8:30am

Take a look at this Video on Inside Edition with Deb Norville :

http://www.insideedition.com/news.aspx?storyId=3525

There is a homeopathic flu vaccine available. Right now , the H1N1 vaccine is on hold after CBS did an investigative report last nite. Plus , nurses are taking the issue of vaccine choice to the courts in the US ( NY and WA ).

beka

Comment by beka on October 18, 2009 at 11:07pm

C- Do let us know how you are doing ?
beka

Comment by Canary3 on October 15, 2009 at 2:33pm

beka,this has been the the most interesting,enjoyable way to inform others around me,a fellow Dystonian,about this disorder. What a delight!

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