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


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Old 12-31-2007, 06:59 PM #1
SarahO SarahO is offline
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Default Hello*)!

Just checking in after being gone a long time!!

I had tremors, RLS and chorea major and chorea with athetosis in my left hand it was all Lyme disease and it is all gone and has been gone for years now thanks to longterm antibiotic therapy.

Just thought I'd throw that out there in case anyone didn't know Lyme could cause that & because my left hand moving my itself was for me the strangest to deal with of all my symptoms-

Take care all-
Sincerely,
Sarah
aka CaliforniaLyme
on LymeNet
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Old 07-03-2008, 04:12 PM #2
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I am new, but saw the word "tremors". I have been diagnosed with essential tremor, mine is genetic. I have it in my left hand and it has changed my life. I have no control over it and am no longer socially active as I was at one time, like singing solos in church, being in charge of meetings, etc. I am so happy for you that yours is gone.
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Old 10-20-2008, 08:17 PM #3
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Default tremors....there is hope

Quote:
Originally Posted by v2342 View Post
I am new, but saw the word "tremors". I have been diagnosed with essential tremor, mine is genetic. I have it in my left hand and it has changed my life. I have no control over it and am no longer socially active as I was at one time, like singing solos in church, being in charge of meetings, etc. I am so happy for you that yours is gone.
hi...just wanted to say I was where you are at now. I also have essential tremor which started in my hands, right worse than left and then moved into my head and neck. It was misdiagnosed as anxiety for about 7 years, then I was treated with multiple medications over the next 10 years. When the medications quit working, I was referred to a neurosurgeon that performed DBS surgery and guess what? It was very successful!! I am able to do alot of things I haven't been able to do in years. I feel like a new person. I just want to say, don't give up and find a good neurologist to handle this disorder, ask questions, try all the meds first. There is hope.
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Old 10-23-2008, 09:11 PM #4
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Quote:
Originally Posted by Carol~*~ View Post
hi...just wanted to say I was where you are at now. I also have essential tremor which started in my hands, right worse than left and then moved into my head and neck. It was misdiagnosed as anxiety for about 7 years, then I was treated with multiple medications over the next 10 years. When the medications quit working, I was referred to a neurosurgeon that performed DBS surgery and guess what? It was very successful!! I am able to do alot of things I haven't been able to do in years. I feel like a new person. I just want to say, don't give up and find a good neurologist to handle this disorder, ask questions, try all the meds first. There is hope.
That is terribly long and very frustrating ordeal to know you're misdiagnosed after 7 long years!
I suggested in various health sites to tap into the power of the internet.
I was suggesting (long-term suggestion) a website which allows the patient to key in the symptoms (the patient knows best), the computer will then generate possible diagnoses, print them out, present it to your doctor who will then make a final diagnosis.
That should limit the trial and error stage and the frustration of both doctor and patient.
I thought of this idea since right now, I'm not exactly sure what I'm suffering from after my accident last 6Sep03. The neurologist then termed it as Myoclonus or more specifically, Lance-Adam's Syndrome, but when I read about the symptoms, they don't appear to match mine.
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Old 10-24-2008, 08:34 PM #5
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It says to be able to post links, I should have 10 posts. I currently have 8. So this post is just meant to meet that requirement.
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Old 10-24-2008, 08:34 PM #6
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I hope this site will eliminate the need to have a certain number of posts before posting a link.
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Old 10-24-2008, 08:35 PM #7
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Quote:
Originally Posted by Carol~*~ View Post
hi...just wanted to say I was where you are at now. I also have essential tremor which started in my hands, right worse than left and then moved into my head and neck. It was misdiagnosed as anxiety for about 7 years, then I was treated with multiple medications over the next 10 years. When the medications quit working, I was referred to a neurosurgeon that performed DBS surgery and guess what? It was very successful!! I am able to do alot of things I haven't been able to do in years. I feel like a new person. I just want to say, don't give up and find a good neurologist to handle this disorder, ask questions, try all the meds first. There is hope.
This is the health site where I posted that suggestion. This site would be the busiest I've encountered so far.

Someone commented I was the only one to make that suggestion, which gives the impression there's not much demand for this, that the current set-up is already fine.
I think they have that impression as not many patients complain or make those kinds of suggestions.
But when they get to hear many patients making similar suggestions or complaints, then my suggestion could get somewhere.

Last edited by Curious; 10-25-2008 at 08:19 AM. Reason: per nt guidelines re links to other forums
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Old 10-26-2008, 08:48 PM #8
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Hi Sarah!

Thanks for dropping back in! Life can get so hectic and demanding, can't it? Hope all is well!


{add: I hope you all don't mind that I just dropped into your forum, *ahem*, I saw Hello and thought i was linking to an MS thread...lol....now that's cog fog from an ms'er for you! }
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Old 01-14-2009, 04:24 AM #9
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Default Great behaviour !!

I really admire testimonials like yours!! Thanks for sharing. Only three things can helps us to move forward. At least that s what I think: specialists advice, understanding of people around us, and positive behaviour ! Only taking a look at your words anyone can see you deal with them all. Thanks for sharing. It is so helpful.







Quote:
Originally Posted by SarahO View Post
Just checking in after being gone a long time!!

I had tremors, RLS and chorea major and chorea with athetosis in my left hand it was all Lyme disease and it is all gone and has been gone for years now thanks to longterm antibiotic therapy.

Just thought I'd throw that out there in case anyone didn't know Lyme could cause that & because my left hand moving my itself was for me the strangest to deal with of all my symptoms-

Take care all-
Sincerely,
Sarah
aka CaliforniaLyme
on LymeNet
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