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Old 03-07-2012, 05:19 PM   #16
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MOMWITHDYSTONIA HB User
Re: Dystonia: Help

Make sure you have a heavy metals test, thyroid and parathyroid levels checked also. And I'm pretty sure I had mom tested for arsenic poison and a ton of others these all produce dystonia like symptoms and you being an outdoors person could have been exposed to just about anything. I hope that maybe if your symptoms are caused by the rocky mountain spotted fever I have read that when the virus is gone so are the symptoms maybe a long shot but also look for rabies. When it comes to your health nothing should be over looked or dismissed I wish the Dr's would understand this. Don't give up on a closer appt just stay on the cancelation list and maybe call once a week to check it

 
Old 03-08-2012, 08:57 AM   #17
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Stonewall1 HB User
Re: Dystonia: Help

Hey Amanda:

Thank you for listening to me. I hope that when I go to see the Movement doctor he will give me a little insight. They have checked my heavy metals, and thyroid. It is so fustrating to know that you are so sick and the doctors say that all your tests are NORMAL. I just hope and pray that this new doctor will LISTEN to me. Thats what makes me upset that the doctors do not want to listen to the patient.. Well you have a good day!!

LEE

 
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Old 03-14-2012, 07:54 AM   #18
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MOMWITHDYSTONIA HB User
Re: Dystonia: Help

Hello Lee I just had to tell you mom got her second botox shot on Monday and for the first time in a year she can straighten her head for a few seconds at a time!!!!! I'm on cloud nine right now!!!! Have a wonderful day!

Amanda

 
Old 03-14-2012, 11:31 AM   #19
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Stonewall1 HB User
Re: Dystonia: Help

Amanda:

I am so so glad to hear some good NEWS for you and your Mother!! I am so glad to hear that the injections are helping!! I am about the same and NO changes since I finished the antibotics last Sunday!! I am still waiting to hear from the doctor to see if the appointment can be moved up, but no word!! I hope you have a great day and your mother too!! Keep me posted!!

 
Old 03-22-2012, 04:30 AM   #20
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Stonewall1 HB User
Re: Dystonia: Help

Hey Amanda:
Just wanted to check in with you to see how your mom and you are doing?? I about the same, just wanted to check with you hope all is well!!

Lee

 
Old 04-16-2012, 05:31 PM   #21
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MOMWITHDYSTONIA HB User
Re: Dystonia: Help

Hello lee,

how did you new dr's appt go? Im hoping you got some relief from him. Well we had to add yet another new med to moms list and had to have it increased (gabapentin) along with having to increase her zanaflex. Her head is still pretty srtaight for the most part from the botox shot in march...but now she is getting these weirs pressure squeezing chest pains so we have been back and forth to her cardiologist for testing but im thinking its related to the dystonia...dr says it rare but not unheard of and soo far every thing that happens to her is rare go figure...my spirits are a little lighter lately though...i was so depressed over all this i went to a psycologist myself he wants me to do group therapy thinks it will better suit mom and i to be able to talk to other people who suffer from dystonia also.

Being on here and talking with you helps me alot also i feel so alone and isolated all the time then i hate my self for feeling that way when mom im sure feels much worse...i pray for you and your family also if you and your wife ever need a voice or a shoulder we are here for you! ....well gotta get back to work now have a great evening!

Amanda
ps tell your wife i say hello and im serious if she needs to talk scream yell rant rave or cry or laugh im here for her also

Last edited by moderator2; 04-16-2012 at 05:54 PM. Reason: please do not post a commercial website, for any reason.

 
Old 04-23-2012, 11:13 AM   #22
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MOMWITHDYSTONIA HB User
Re: Dystonia: Help

Hello Lee just wanted to sat hello....always thinking of you and your family, have a great day.
Amanda

 
Old 04-23-2012, 03:46 PM   #23
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Stonewall1 HB User
Re: Dystonia: Help

Hello Amanda: So sorry that I have not gotten back to you. I have been in the hospital last week! My appointment with the movement doctor went well. He diagnosed me with Rapid Onset Dystonia! He changed my medicine to Bacolfen (not sure about the spelling). He scheduled me for a spinal tap and had that on April 11. That thing was terrible!! My back and head hurt so so so bad after that spinal tap. Went to the emergency room and they gave me some pain meds and told me it would go away in a few days. That was on Saturday before last. I started vomiting after I left the er and it continued until last Wednesday when I went back to my primary care doctor. She put me straight in the hospital and on last Thursday they performed a blood patch. My spinal fluid was leaking out of the spine into my body. I have been so so so sick. Also one week before I fell in the bath tub. Luckily I did not break anything. It has been a bad few weeks!!

How is your mom???

Have a good day!!

 
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Old 04-23-2012, 04:10 PM   #24
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MOMWITHDYSTONIA HB User
Re: Dystonia: Help

Ohhhh myyyy goodness! Wow soo sorry to hear that..sounds like you have the same kind of luck mom and i do...if it werent for bad luck we wouldnt have any at all most of the time. So the spinal tap, why did they make you have that? Are they thinking your rapid onset isnt genetic after all?
Thats one thing they never did to mom because they were convinced hers was due to a mental problem and the new dr never felt it necessary since her condition was definately caused or aggrivated (if hers is genetic) by the medicine. I hope you are well very soon, soo sorry to hear your feeling so bad.

Have a good day lee
amanda

 
Old 05-25-2012, 05:54 AM   #25
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Stonewall1 HB User
Re: Dystonia: Help

Hello Amanda:

So sorry that it has been a while since I have posted to you!! I had a doctors appointment yesterday. The doctor wants me to see a physocologist. He said that they work close with these doctors. Why do they always say that stress could be causing our symptoms? They look at you for 10 minutes and say that you are STRESSED!! UGRH!! I have started wearing a brace to stretch my ankle. I have to wear it for 5 hours a day. The pt is going good.

How is your mother?? I hope she is doing well. How are you??

I also signed up for my SSDI disability in Feb. and had not heard a word. Got a letter the other day and I have been approved!! Finally some good news!! I was worried about that! My wife is a teacher and its hard to get by on only one salary.

I hope you are doing well!! Hope to hear from you soon!!

 
Old 06-25-2012, 03:54 PM   #26
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karen kerr HB User
Re: Dystonia: Help

i have a daughter 27 with c.p. with dystonia. she is on artane, oral baclofen, and now tetrabenazine because she has been in a dystonic storm for 5 weeks. All of her body.
Its been hell. Shes been on valium if I cant give her relief. Been on the tetrabenazine for the past 12 days. Just new to us.
How are you doing.

 
Old 06-25-2012, 06:53 PM   #27
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Stonewall1 HB User
Re: Dystonia: Help

I am slowly getting some relief. My therapy is going good. The Balocophen is helping. I am
wearing a brace 5 hours a day and it seems to help. Some good days and some bad days!! One day at a time!!

 
Old 06-26-2012, 09:06 AM   #28
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MOMWITHDYSTONIA HB User
Re: Dystonia: Help

Im soo sorry to hear bout your daughter...my mom was in a dystonic storm for about 3 months straight. She is now taking baclophen, klonopin, gabapentin, zanaflex, and recieves botox injections in her neck and shoulders. She takes well over 400 pills per month. It keeps the storms pretty much at bay but every now and then it still gets her. Her left arm and her right leg and her neck are always twisted and cramped up. Our dr. Just told us that we should look into dbs now since the medicine and shots are not working as they should...its been a hell of a ride, im terrified for her to have the surgery, but i hope it will work..im praying for your daughter karen!

And to stone wall..im soo happy to hear you are doing better i was soo worried for you when i saw your last post! I pray for you every day as well!

 
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