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anyone with atypical dystonia?
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Posted by: TomandRachel
03/30/2004, 20:36:20


Tom had his appointment with Dr. Lee at Vanderbilt, here in TN. The Dr. ran 7 more tests just to be absolutely certain that Tom doesn't have Huntington's etc. So, once again, we wait. Does anyone out there have arm or leg tremors in addition to the BEB & Meige? Tom has also developed stuttering. It's frustrating. But the good news: We had our third child on March 6th at 9:02 PM! We were concerned about me driving in labor, but we pulled it off without any road violations that I'm aware of! ; ) We've named her Audrey Kathleen and we think she's absolutely perfect.

I'd love any feedback you might have that could help with this diagnosis! Thanks, Rachel (& Tom)




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Re: anyone with atypical dystonia?
Re: anyone with atypical dystonia? -- TomandRachel Top of thread Archive
Posted by: Karen
03/30/2004, 22:38:50


Congratulations, Rachel and Tom on the birth of your daughter. Glad to hear you were able to get yourselves to the hospital. Now won't that make for some great story telling when Audrey gets older? LOL.

I'm afraid I can't help with your other questions since I'm new to BEB. I sure hope you can get some answers and some help once the test results are back.

Good luck to you Tom!

Karen in Wisconsin




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Re: CONGRATULATIONS MUM & DAD
Re: anyone with atypical dystonia? -- TomandRachel Top of thread Archive
Posted by: June in Toronto
03/31/2004, 05:56:50


I can't help with Tom's symptoms as Ihave beb/meige - it must be awful for him to have tremors and stuttering as well as beb/meige. But I do want to congratulate you on the birth o fAudrey Kathleen - I'm sure she is a little miracle and beautiful. You did double-duty Mum driving to the hospital and having the baby - May God Bless You All.

June in Toronto, Canada who loves to hear about `little miracles'




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Re: anyone with atypical dystonia?
Re: anyone with atypical dystonia? -- TomandRachel Top of thread Archive
Posted by: Kathleen
03/31/2004, 09:19:59


Congratulations! I don't have any help to offer, either, but perhaps there is a connection. My husband and kids have mentioned to me that they have noticed that my hands are never still - I am constantly moving my fingers or the entire hand. I can stop it, though, once I am aware of it, so don't know if it is similar to what your husband is experiencing.



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Re: anyone with atypical dystonia?
Re: anyone with atypical dystonia? -- TomandRachel Top of thread Archive
Posted by: Claireuk
03/31/2004, 09:21:04


Congratulations!

My dystonia was a-typical ..starting with ST and then a tremor and then BEB/Meige..
now I have changed my thyroid medication to natural thyroid, and started on high levels of magnesium supplementation as per my doc (a blood test showed low levels)...things are getting much better! The magnesium seems to have made a lot of difference, and if I forget to take it I can soon feel it.
Hope all goes well for you, and you get some sleep, somehow, somewhere!"!!!!!
Claire




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Re: anyone with atypical dystonia?
Re: anyone with atypical dystonia? -- TomandRachel Top of thread Archive
Posted by: Lynn Yarbrough
03/31/2004, 10:56:23


Hi Rachel,

Congratulations on your new child's birth, and on getting to the hospital without incident. You and my wife are both members in good standing (or is it sitting?) of the "OhMyGodTakeTheWheel!" club (of pregnant spouses of spastics). :-)

Sorry, but I have nothing to offer about your husband's condition. I hope and pray that something can be found to help you all.

Cheers,

--- Lynn




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Re: anyone with atypical dystonia?
Re: anyone with atypical dystonia? -- TomandRachel Top of thread Archive
Posted by: Raymond Fudge
03/31/2004, 11:41:06


I have "restless leg" syndrome. It comes and goes. Also sometimes associated with it is "restless arm" syndroome. However, I have tremors in my right arm, about 18 years now. It is so slight it is rare for someone to notice except when holding something out in front of me, so I try to use my left hand. My daughter, no BEB (yet), has Lupus along with the restless leg and arm syndromes. The legs and arms keep her from work at least once a month and sometimes more.

Congratulations and may Audrey grow up to be all you wish for.




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Re: anyone with atypical dystonia?
Re: anyone with atypical dystonia? -- TomandRachel Top of thread Archive
Posted by: Steve-In-Tennessee
04/01/2004, 14:02:41


HELLO, I DO NOT BELEIVE THAT THERE IS A TYPICAL ANYTHING WITH DYSTONIA. I ALSO VISIT VANDY AND SEE DR, THOMAS DAVIS, A LITTLE QURKIE GUY, BUT MY WIFE AND I LIKE HIM A LOT. I HAD A LIMITED MYECTOMY ABOUT 1 1/2YEARS AGO DONE BY DR. RICHARD ANDERSON THAT WAS A SUCCESS IT WILL BE 2 YEARS IN NOV. I QUIT ALL MY DRUGS AND BOTOX. IN FEB 2003 MY BREATHING WAS SO WILD I WENT TO THE EMERGENCY ROOM TWICE TO BE CHECKED OUT, THEN I STARTED STUDDERING REAL BAD AND STILL DO. I AM NOW TAKING KLONIPIN, ARTANE, ZANEX SOMETIMES IT SEEMS TO HELP WHEN A HAVE BAD BREATHING SPELLS & A DRUG FROM THE UK TETRABENAZINE "XENAZINE" IT IS VERY EXPENSIVE. CAMBRIDGE LABS ARE IN THE PROCESS OF GETTING IT APPROVED BY THE FDA, AT APPROX. @ 350.00 PER MONTH I WISH THEY WOULD HURRY. I TAKE 5 OR 6 A DAY I CANNOT REMEMBER RIGHT NOW. THIS NEW DRUG SEEMS TO HELP ENOUGH FOR ME TO KEEP TAKING FOR NOW. I DO NOT HAVE ANY TREMORS BUT DOCTOR DAVIS TELLS ME THAT IF I TAKE TO MANY OF THE ARTANE OR THE XENAZINE IT CAN CAUSE TREMORS THEN I SHOULD BACK OF THE QUANITY THAT I TAKE .WE ARE TRYING DIFFERENT COMBO'S OF DRUGS AND EVERY VISIT DR. DAVIS ASK IF I HAVE HAD ANY TREMORS SO FAR I HAVE NOT. I HOPE THAT THIS HELPS YOU A BIT. STEVE IN TENNESSEE, GOD BLESS AMERICA



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Re: anyone with atypical dystonia?
Re: anyone with atypical dystonia? -- TomandRachel Top of thread Archive
Posted by: Steve-In-Tennessee
04/01/2004, 14:10:15


P.S. SORRY, CONGRATULATIONS ON YOUR NEW ADDITION. STEVE



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Re: anyone with atypical dystonia?
Re: Re: anyone with atypical dystonia? -- Steve-In-Tennessee Top of thread Archive
Posted by: TomandRachel
04/06/2004, 21:31:24


Thanks for all of the encouragement everyone. Our entire lives we strive to be unique and intriguing. Now that we are, we find we don't like it a bit! ; ) Glad to hear we're not alone.

Rachel & Tom

P.S. We are almost positive that Audrey said "Ah-goo" last night. She must be exceptional. ; )




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