IS IT ESSENTIAL TREMOR OR DYSTONIA?
As some or many of you know, I am going to see Dr. Young in Southern Calif in about a week and a half.
I have seen 6 sepcialists in the past 26 years prior to him. Half say ET only and no secondary neuro issues. The other half, 3 different dystonia diagnosis.
I have done years of research and much into the symptoms of ST/CD and ET. Many symptoms as you may well know are identical or so slightly different between the two... and only a few stand out to be very different between the two.
I am self convinced I have ET but.... I am reaching out to the group and asking anyone who knows someone or yourself or has personal knowledge as to why I am getting mixed results in my diagnosis?
What I lack is the symptoms in Dystonia that are not in the category of ET...
I don't ever get: abnormal neck/head posturing, freezing, jerk or pulling (ONLY very sligh to left when bad tremors kick in), contorting, contracting, cramping, etc.
I do get some soreness at times in the neck muscles from all the head shaking.
I am trying to obtain more info and opinions to situate these conflicting diagnosis.
thx,
Mo
I have seen 6 sepcialists in the past 26 years prior to him. Half say ET only and no secondary neuro issues. The other half, 3 different dystonia diagnosis.
I have done years of research and much into the symptoms of ST/CD and ET. Many symptoms as you may well know are identical or so slightly different between the two... and only a few stand out to be very different between the two.
I am self convinced I have ET but.... I am reaching out to the group and asking anyone who knows someone or yourself or has personal knowledge as to why I am getting mixed results in my diagnosis?
What I lack is the symptoms in Dystonia that are not in the category of ET...
I don't ever get: abnormal neck/head posturing, freezing, jerk or pulling (ONLY very sligh to left when bad tremors kick in), contorting, contracting, cramping, etc.
I do get some soreness at times in the neck muscles from all the head shaking.
I am trying to obtain more info and opinions to situate these conflicting diagnosis.
thx,
Mo
Tags: abnormal, contorting, dystonia, essential, freezing, posturing, tremor
Replies to This Discussion
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Permalink Reply by beka on -
I have read them. Sounds like your appointment went well. At least it must be a relief to a degree mentally to know that you HAVE a Diagnosis. YES ?
OK, what surgical options have been offered - I know the DBS . What did he say about Gamma Knife ?
I would join the Yahoo DBSSurgery Group BB to get everyones input on how they made their decision. Regrets about DBS - just somewhat ambivalent about it still. Most likely as lifestyle changes are and should be expected. Anyone telling you " how great their DBS is " is not forthcoming. It involves a learning curve and you have to have alot of patience and a good workable team that works with YOU. And it does affect you emotionally in a strange way - having an permanent implantable foriegn object in your body is a strange thing that one cannot used to overnight. I would not rely solely on my opinion as I do not have essential tremor- I had more of a mixed movement disorder- generalized dystonia, cervical dystonia, dysphonia and Myoclonic jerks. And now RLS at nite..which explains why I never sit down at work. Patients have commented on that aspect..in constant motion like tonight again...a big factor of why I did the surgery in 2004- to remain an active nurse. Only you can decide to to do the surgery. look at the below list of questions, be preared, learn and GO for it if this is the option given to you.
I have added the list of Top 55 Questions to Ask about DBS here for you.
Let me know what you think..
beka - Attachments:
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Permalink Reply by Mo on -
beka...
i have reviewed and seen these questions some time ago and i have researched dbs till blue in the face. as I mentioned in my original post... dr. young is on the fence about gamma knife.
i viewed your two short clips on alex since I was in thousand oaks meeting with dr. young the day of the show... is there a full viewing on this and does anyone or you know if alex is going to go through with dbs?
yea i can only imagine what a huge decision dbs is and having the equipment residing within a human body... if only there were another way...
i belong to the yahoo dbs group for about 2 years now.. i havent gone their in quite awhile because i had felt i obtained enough info regarding dbs but really because i was getting denied surgery option and going there to envision tremor free like many on there obtained was making me envious lol... now that i have this option.. i may revisit the dbs group.
wow that really blows you have the grab bag of neuro diseases and problems...
from what i have learned from the yahoo dbs group... most on there have pd and their dbs surgery was questionable, some problems like speech but a trade off of the multitude of pd symptoms that made it worth it etc.. those with et on there,and there are few, seem to have the most benefit and success with it.
mo
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Permalink Reply by beka on
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So, what do you NOW think about gamma knife surgery ? Are you a candidate for that procedure..?
Yes, there are more problems with DBS than people want to admit. If you have to go back to taking botox, medications to handle symptoms then I do wonder about the efficacy of the procedure.
There has to be a way to alter the brains circuitry to control abnormal movements.
beka
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Permalink Reply by Mo on
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i am candidate for gk.. but dr young is on fence about it.
botox was not that effective for me because i was being treated for cervical dystonia... what the movement specialist thought i had... i think i have been a guinea pig of trials and sorts based on different diags and if it is not the right daig.. chances are the treatment options wont work... so they chalk it up to this is what you have try next thing... but if the diag is wrong, wouldnt the treatment option also be wrong and therefore fail?
i am still gung ho about gk.. despite the potential risks and permanency.. they both have them... i am gonna follow for the next few months a gal i met on here who has same symptoms as me and was offered both gk and dbs... she took gk.. she has had 4.5 months go by and so far so good.
mo
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Permalink Reply by ramona on -
There is a group specific for those who have dystonia, too. It is DBSforDystonia.
Blessings
Ramona
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Permalink Reply by Mo on
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hey ramona. i dont have dystonia like some movement specialists think i have. i was originally diag with ET, then dystonia by others, now back to that diag as of recent. didnt we meet on dbs yahoo group btw?
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