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matt40413

Diagnosed with ET but not so sure?

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matt40413    0

So I've had a sort of "thumb/finger " tremor on my left hand for quite some time (technically it's on my right too, but my left hand is always the more "twitching one").

Basically at rest it'll be fine. I can lay my hands on my lap and be fine (occasionally depending on the position of my thumb it can possibly twitch but otherwise resting them on my lap/sleeping/etc.. they do not twitch at all). But whenever I pull my thumb towards my other fingers it'll start to tremor (even if my "hand" is at rest). I guess this is considered a "postural" tremor, but I know ET patients have that too. It sucks because when I type my thumbs are held out in a tense fashion which makes it worse. Caffeine/Lack of sleep/etc.. absolutely make it worse as well. Basically any sort of "opposing" the tension of anything in a certain posture with my fingers seems to cause the twitching. It happens to my other fingers too, but my thumb on my left side is the most apparent. For instance stretching out my fingers may not make them twitch, but pulling them inward barely together will make them start to twitch.

It's like my fingers only twitch at certain 'positions'? or when there is some sort of tension on them. I can almost feel like they are tense and then it will start to twitch. This is pretty variable however and twitches worsen/are better depending on caffeine/sleep/etc., is this still considered a resting tremor if my hand is at rest BUT it requires a certain posture of my thumb/fingers to twitch?

For reference i've had this ongoing for about almost 7 years now. I remember bringing it up to a neuro 7 years ago. It hasn't really "changed" in 7 years and I saw a Neuro again about a year ago that diagnosed me with ET. Im 31 years old so Im wondering if she sorta blew past any possible parkinson's diagnosis....but she did feel me to make sure I felt "loose" muscle wise, and watched my walk/arm sway.

I guess the big question is: If it is indeed just ET, I need to just accept it. But in the span of 7 years would someone with YOPD have progressed in that span of time? I can't really say my tremor is any worse really (maybe VERY VERY slightly).

As far as other symptoms I have none, I occasionally "feel" off-balance, but i don't actually fall or have a weird gait. I think it may be anxiety related. and my muscles feel flexible like normal (besides my neck being always tight, but I sit at a computer all day and have terrible posture). Also my left leg doesn't feel weak but gets sore very easily  (like feels like shin splints.....but only in my left leg), however it has no weakness and is just sore (maybe a nerve problem relating to back/spine as im sure I have back/neck problems due to my job).

Should I just accept the ET diagnosis? Does the dizziness sound like anything PD related? (Since im not actually falling/etc...)...it's almost just the 'feeling' of uncoordination....but I can run/etc.. just fine (Honestly if I don't "think" about it, then i don't even notice the feeling). Also the tremor....does that seem like PD? or would something have worsened in the 6 or so years i've had this issue.

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Dr. Okun    409

This is a really tricky situation.  If there is any question between PD vs. ET there is a a scan called a DAT scan that is labelled to help differentiate.

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matt40413    0
15 minutes ago, Dr. Okun said:

This is a really tricky situation.  If there is any question between PD vs. ET there is a a scan called a DAT scan that is labelled to help differentiate.

Does what I described sound even sound remotely like PD? I realize it'd be rare for the age range but given it basically has not progressed at all in almost 7 years...would that help rule out PD?

Besides the slight dizziness/off-balance feeling (Which could honestly be anxiety) I don't really have any other PD symptoms (outside of my tremor, which is non-resting).

my neuro did perform a series of tests on me, but not the DAT scan.

Edited by matt40413

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Dr. Okun    409

There are cases of PD that have mainly rest tremor so it is tricky.  The lack of progression would make us question as to whether it is really PD.

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matt40413    0
7 hours ago, Dr. Okun said:

There are cases of PD that have mainly rest tremor so it is tricky.  The lack of progression would make us question as to whether it is really PD.

Yeah. It's been 6 years, for reference I was diagnosed with ET by a Neuro not by a GP. she had done the typical PD physical tests. Besides the occasional dizzy feeling (Which im almost convinced is anxiety or some neck tension) I don't really have any other symptoms.

The only "rest" anything I have is an occasional single twitch, but even that requires my fingers to be resting in a tense position. But it'll only "twitch once (it won't actually tremor back and forth, just sort of a single "jerk" inward to get it out of the "tense" position). Im guessing that isn't actually technically a "tremor"?, and even that is rare. My actual tremor only appears when im bending the fingers in a certain position. Still though...it's been this way for 6 years and is only barely (if at all) worse than it was when it started.

I've heard YOPD typically shows with Dystona/other symptoms over tremor anyways? Im not really sure what dystonia would feel like but Im guessing it'd be pretty noticeable? My neck is sometimes stiff/sore but i sit at the computer most of the day due to work (In a terrible posture no less ha)

 

Also did you mean "There are cases of ET" instead of "There are case of PD that have mainly rest tremor", I thought most cases of PD were with resting tremor? (Which I do not have)

By the way, do you have any comment on this:

One major caveat, though: Changes in balance and gait tend to emerge as the disease progresses

I read this on multiple sites regarding parkinsons. Is this usually true (if so it would make me feel a bit better about my "dizziness" issue.

Edited by matt40413

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Dr. Okun    409

There are actually PD cases that have only rest tremor (confirmed by PET).  ET can have problems with gait and balance so the difference can be hard in some cases.  The dizziness doesn't sway me one way or the other.  Without seeing you my guess is that you likely have ET.  One other possibility with neck pain is dystonic tremor.

There are deep brain stimulation techniques for all these tremors if meds do not help.

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matt40413    0
2 hours ago, Dr. Okun said:

There are actually PD cases that have only rest tremor (confirmed by PET).  ET can have problems with gait and balance so the difference can be hard in some cases.  The dizziness doesn't sway me one way or the other.  Without seeing you my guess is that you likely have ET.  One other possibility with neck pain is dystonic tremor.

There are deep brain stimulation techniques for all these tremors if meds do not help.

It's funny you mention dystonic tremor because I do get twitches in my neck/head where it'll feel like a quick spasm which will twitch my head barely. It's like a quick muscle spasm. It's usually worse of course when i've been working at the computer a lot otherwise I generally don't feel it. I looked up focal dystonia in the fingers and it seems like they have similar symptoms (Twitching if their fingers are in a certain position) and I can feel the pain when I bend my fingers very far down or back for example (Maybe it's CTS...who knows).

It is reassuring it sounds like ET, the only symptom I have is really tremors in my fingers at certain positions (and that's not even a rest tremor technically). Honestly though Im really curious if it's an actual tremor, since it's not "rhythmic", it's sort of twitchy but the amplitude and frequency do not stay the same. Not sure what really constitutes one way or the other. When I see tremors on youtube videos for PD it's very rythmic. Mine is very twitchy back and forth (as in it stops/starts intermittently, and my fingers won't move the same distance when they twitch/etc....)

Last question though: you say "The dizziness doesn't sway me one way or the other", I thought postural instability was a PD symptom? or is it usually only something that happens later on in the disease (When PD is very obvious) so that doesn't really "fit" here? Since my balance/gait are actually fine (My wife even did the "pull" test on me where you pull me back to see how many steps it takes to regain) and even with a forceful pull It still only took me a step or two to regain balance). My "dizziness" is really just that feeling of feeling off-balance...but really not being off balance.

 

Also thanks so much for answering my questions!

Edited by matt40413

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