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

Tags: abnormal, contorting, dystonia, essential, freezing, posturing, tremor

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Permalink Reply by sisdailey on October 5, 2009 at 7:18pm: Distinguishing Dystonic Tremors

Dystonic tremors are quite variable in their presentation and on some occasions can look like essential tremor. They are, however, seldom seen in isolation and usually are associated with dystonic posturing. The tremors are also sometimes somewhat more irregular than what is seen with essential tremor. Because essential tremor and dystonia tremor may look the same, and both can be genetic, the question was recently asked whether patients with essential tremor might carry an abnormality at the DYT1 locus. This has been found not to be the case although the actual gene for essential tremor has not been identified.

Dystonic tremors refers to dystonia and superimposed tremor .It is often worsened when the patient voluntarily moves in the direction away from the force of the contraction. Dystonic tremor may occur in the body part affected by the dystonia especially dystonic tremors with cervical dystonia. The tremors have a frequency of approximately 4 Hz to 7 Hz, are mainly postural, and kinetic without a rest component. The second type of dystonia and tremor is seen when the tremor involves a body part not associated with the dystonic segment. An example would be cervical dystonia in a patient with upper limb postural tremor. These tremors are generally resistant to pharmacotherapy, and they are best managed with local injections of botulinum toxin.

Source : www.dystonia-foundation.org; ▶ Reply to This

Permalink Reply by Mo on October 5, 2009 at 8:11pm: hey sis... i have read most of this info as to date. i guess i cant seem to determine what info realy stands out as to which diagnosis i have. if i have dystonia... i wonder if other surgical options other than dbs are on the table. i know they do pallidotomy or thalamotomy for dystonia. also, the last two days i have been researching selective devervation which is also an option for st/cd. does anyone have any feedback on this?

and the gene associated with et has been 100% identified... Lingo1 (one) gene.

something u did add here i did not know sis is the tremor for dystonia worsens when the patient voluntarily moves in the direction away from the force of the contraction.. that is a new one to me.

if you saw the gal on the doctor's show with montel, her head movement was always the same andshe was diagnosed with dystonia. same pattern and slow jerk movements. according to what u have here sis and what i have read... "Dystonic tremors are quite VARIABLE in their presentation and on some occasions can look like essential tremor." this would not hold true to dystonia patients such as the one on the doctors show... she had same pattern/movement all the time. my head tremor is fine tremor when bad ones hit or even at a mild time of tremor in my head it is a fine tremor. at times it can appear to be variable, with a very slight pull or jerk on my left side. it is so slight and only happens when bad tremor kicks in.

so as u can see i am still at a quandry.; ▶ Reply to This

Permalink Reply by sisdailey on October 5, 2009 at 9:07pm: Hello Mo:

I did see the young girl on the doctor's show. She had a completely different form of dystonia then you think you have. She was shaking all over her body and could hardly walk. Don't compare yourself to her. No case is the same as I am sure you know. In my own opinon I don't like the idea of having selective devervation for the reason if it does not work it is not reversable. I have know some people that had it and it did not work so that left them in much worse shape with a lot more pain to deal with. I will post more on this topic.

Love you my friend, Sisdailey; ▶ Reply to This

Permalink Reply by Mo on October 5, 2009 at 9:11pm: yes sis i understand about movements being different for each dystonic person.. the thing i have seen tho is most have a similar pattern of movement.. more of a slow jerk motion... vs a very fine rapid tremor.

and that gal wasnt entirely shaking like a tremor shaking.. she had pulls of muscles and such going inward... i dont have any of this. this is what confuses me. so i am not comparing myself to her but many who have her similar pattern of movement and pulling in different directions.. downward, back inward, away etc. i dont have any of this.

thanks on denervation comments too.

much love.; ▶ Reply to This

Permalink Reply by Mo on October 5, 2009 at 8:50pm: Also forgot to add... do any of you get the symptom what is called "MOTOR RUNNING"?

this is an ET term but wanted to make sure it is or is not a dystonia term/symptom.; ▶ Reply to This

Permalink Reply by marie on October 5, 2009 at 11:18pm: mo-isthe surgeon going to decide which one you have and what is motor running.love,marie; ▶ Reply to This

Permalink Reply by Mo on October 6, 2009 at 12:30am: yes marie, dr young is gonna decide on my diagnosis. motor running is an awful feeling that encompasses several symptoms or leads into several symptoms and starts with one i should say. i have never heard anyone with dystonia say they have this, only et'ers and i know i have it.. i used to describe it as the feeling of thousands of chemicals pouring out from the brain and then feeling like they aer dying out on their way down to send the communication signal... when i told this to another et'er, he said, "Oh that is called motor running.." every et'er i have spoke to suffers from it. it will then cause heavy headedness, dizziness, massive head rush, pretty much all at one time.; ▶ Reply to This

Permalink Reply by beka on October 6, 2009 at 5:29pm: Hi Mo - Have you ever thought that you might have a MIXED COMPONENT of both disorders... ?

I think you need to go and see Dr. Young and then move forward...And decide on a treatment. You have spent soo much time with aggravating symptoms. They need to STOP..So that You can live...

beka; ▶ Reply to This

Permalink Reply by Mo on October 6, 2009 at 5:59pm: beka,

my last movement specialist from parkinson's inst said no medication helps head tremor... then stick me on two medications... i was reluctant to take them since i have been on various meds that have done nothing... but one out of the two had little side effects.. what a great treatment option and he would not go outside it.. denied me dbs and gamma knife. said both to risky.. thou shall not harm blah blah... i thought how about thou shall give me a quality of life? he diagnosed me with myoclonus dystonia... i said what about this... maybe i have et and secondary dystonia? after he was adamanat i did not have et... he said that this is a possibility. honestly! i am sick of doing their job and would like to drop kick each specialist i have seen so far... they arent even worth the gum stuck to the bottom of my shoe.

they have tried to stop the symptoms... no one will go past meds.

mo

and i will see dr. young oct. 15th at 11 am.; ▶ Reply to This

Permalink Reply by beka on October 6, 2009 at 6:22pm: See my response on the WALL board for Dystonia... Good Luck.

beka; ▶ Reply to This

Permalink Reply by beka on October 19, 2009 at 3:31pm: Any news about your appointment with Dr. Young- Mo ??
Are you OK ???

beka; ▶ Reply to This

Permalink Reply by Mo on October 19, 2009 at 8:35pm: hey beka.. see in comments section on my update thanks.; ▶ Reply to This