Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS).


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Old 06-06-2013, 06:00 AM #1
skcher98 skcher98 is offline
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skcher98 skcher98 is offline
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Join Date: Mar 2013
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Default ET, Parkinsons & Normal Datscans

Can anyone else relate to this situation? I'm needing to know I'm not insane at this point.

I originally started on this site with vertigo and balance issues, had an mri with bright spots, and was headed to the neuro. Since then I have added a fine tremor mainly in my right hand at rest, but when I hold onto something that is attached such as a rail or something will sometimes travel up my arm. There's other twitches just about everywhere which is FUN let me tell you. Also, I apparently don't swing my arm when I walk and other funny little thing I didn't even notice. Add all my chronic back pain and I'm the perpetual pain for my dr's. lol.

Anywho. He leaned towards PD but wanted to rule out ET so he sent me to get the Datscan done. He also put me on Topomax. By the time I returned, tremors are worsening, vertigos growing and now I'm beginning to know I'm having a hard time articulating myself. Generally I feel like I'm losing it. I know part of this is a side effect though. Neuro actually told me that he was surprised that the scan came back normal. I asked him then you can rule out PD for me then. He says no. GREAT. I asked him at least 5 times in that appointment and he wouldn't. Apparently I'm a general topic of discussion in the local neuro community and all dr's point the same direction.

Next step. He wants me to go to a movement disorder specialist in Augusta GA at the Regents Center which is supposed to be top and have them take a look and see if theres is something he's missing. Of course that's not til August, UGH!!!!

Topomax has been moved all the way to 100. He put me on Valium 5 which did start to work until about a couple of weeks ago where my vertigo has started coming back full force (marked with a full face plant in front of a grand lobby of 10 glass elevators which was NOT at all embarrassing) and has continued. He started me on Sinemet yesterday.

P.S. I'm only 37. I know this all seems nuts; it seems nuts to me. I just need to see if someone else out there has been through this and can relate. My inner brain keeps telling me to suck it up, get the kids to school, get to work, get your crap done, keep your husband happy and STOP YOUR WHINING, but my body is not cooperating and I'm trying REALLY hard not to let this bring me down. Having someone to relate to in some strange way helps keep me positive.
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Old 10-21-2013, 02:14 PM #2
Ginacbird Ginacbird is offline
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Default Wondering if your still sick?

Quote:
Originally Posted by skcher98 View Post
Can anyone else relate to this situation? I'm needing to know I'm not insane at this point.

I originally started on this site with vertigo and balance issues, had an mri with bright spots, and was headed to the neuro. Since then I have added a fine tremor mainly in my right hand at rest, but when I hold onto something that is attached such as a rail or something will sometimes travel up my arm. There's other twitches just about everywhere which is FUN let me tell you. Also, I apparently don't swing my arm when I walk and other funny little thing I didn't even notice. Add all my chronic back pain and I'm the perpetual pain for my dr's. lol.

Anywho. He leaned towards PD but wanted to rule out ET so he sent me to get the Datscan done. He also put me on Topomax. By the time I returned, tremors are worsening, vertigos growing and now I'm beginning to know I'm having a hard time articulating myself. Generally I feel like I'm losing it. I know part of this is a side effect though. Neuro actually told me that he was surprised that the scan came back normal. I asked him then you can rule out PD for me then. He says no. GREAT. I asked him at least 5 times in that appointment and he wouldn't. Apparently I'm a general topic of discussion in the local neuro community and all dr's point the same direction.

Next step. He wants me to go to a movement disorder specialist in Augusta GA at the Regents Center which is supposed to be top and have them take a look and see if theres is something he's missing. Of course that's not til August, UGH!!!!

Topomax has been moved all the way to 100. He put me on Valium 5 which did start to work until about a couple of weeks ago where my vertigo has started coming back full force (marked with a full face plant in front of a grand lobby of 10 glass elevators which was NOT at all embarrassing) and has continued. He started me on Sinemet yesterday.

P.S. I'm only 37. I know this all seems nuts; it seems nuts to me. I just need to see if someone else out there has been through this and can relate. My inner brain keeps telling me to suck it up, get the kids to school, get to work, get your crap done, keep your husband happy and STOP YOUR WHINING, but my body is not cooperating and I'm trying REALLY hard not to let this bring me down. Having someone to relate to in some strange way helps keep me positive.
I have just turned 46, but have been sick to several years now with a lot of your problems. What did they come up with?
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