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10/26/2011 07:36 AM

New to the group.

CrampedUp
CrampedUpPosts: 4
New Member

Hello all.

I am looking forward to meeting you all.

I have generalized dystonia in which it seems to be in remission if that is possible.???

I started on Cogenten a week ago, and my symptoms went from so many storms to none.

I have been battling this for 5 years. At first I thought I was an epileptic, having so many seizures ( gran mals )but now I know that they were dystonic storms.

I have a rare form of muscular dystrophy called mcardle's disease which consists of muscle cramping and fatigue, winch makes my dystonia worse.

The strangest thing that happens to me is at times I feel totally drunk. And it doesn't have anything to do with medication, but at the same time after I take my meds, the drunkin feeling goes away. I don't drink at all.

When the doctors here at the nursing home thought I was having seizures, they treated me with ativan, now that they know it is dystonia

they basically refused to treat me.

I am way too sedated and they won't do anything about it. I could sleed 24/7.

My MD specialist an hour and a half away put me on cogentin which has worked wonderfully.

My family support is non icsistant.

I am on 40 mg's of baclofen, 20 mg's of cogenton and 3 mg's of ativan.

Bless you all

Norm

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10/26/2011 11:37 AM
poetslady2
poetslady2  
Posts: 40
Member

Hi Norm, Welcome to the group. How old are you, Norm?

I have geeralized dystonia. Mine was casued by polio at age 8.

I have had dbs . Now I am pain free!

Where do you live? i live in upstate NY.

I had my dbs in NYC 7 years ago.

Mary B Miller


10/26/2011 09:36 PM
gulfcrest
gulfcrest  
Posts: 114
Member

dbs?

10/27/2011 10:36 AM
CrampedUp
CrampedUpPosts: 4
New Member

Hi Mary.

I am 54 and live in Niagara Falls Canada.

I am glad to hear that you are free of dbs..not really sure what dbs is but that is wonderful to hear.

Blessings

Norm


10/27/2011 12:08 PM
poetslady2
poetslady2  
Posts: 40
Member

Hi Norm,

DBS is: deep brain stimulation. I have wires from my brain to my chest just below my collar bone. I have two stimulaters. They control the brain waves that go through my body.I used to be in pain every where.

Now, I'm pain free! Istill use a wheel chair. But, I can use my hands.

I cook clean house.I love doing what I can do now.

My husband he is wonderful, he helps me in way i need it.

I lost my voice when my son was 3 years old. He would talk for me.

Mary


10/27/2011 03:17 PM
CrampedUp
CrampedUpPosts: 4
New Member

That is so awesome Mary that the DBS worked so well for you.

I am so happy for you!!

Blessings

Norm

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