I can't edit my last post on types of tremor. There seems much speculation about what type of tremor I have. It's been called resting, active, benign tremulous parkinsonian, and many other things which have to do with where it's sourced.

My main neuro tells me if inderal (propanolol) affects it - makes it better - then it is not parkinsonian.

Obv this is all confusing and I'm trying to get off sinemet. Does anyone have an input on what difference there is whether it is active AND passive as mine is?? And is the inderal remark true from what you understand?

Thanks. I'd like to have some questions for my neuro when I return in a week. It seems to make a big difference where it's sourced it seems. Since we know of no doctors that have taken somone off sinemet we are treading virgin territory.

It seems I have don't have PD, what I do have I am trying to determine.

Thanks very much.

hi d0gma,

you are unique and are probably teaching us instead of us helping you. i had never heard of inderal before your posts. based on what you say and looking up inderal, i wondered if you have any of the other symptoms that inderal is prescribed for , like high blood pressure, heart arythmia, angina, or other circulation problems.

You are on quite a journey and i admire your courage. keep us informed as you are -it's new stuff for some if not all of us.

Hi,

I was diagnosed with Essential Tremor then "upgraded" to PD after five years when slowness started creeping and I now have a resting tremor. I have tremor atypical of both ET and PD tremor. Dystonia can also cause tremor but rarely in the hands. I have a family history of tremor but no reported PD.

I am no expert but have researched this exhaustively because I distrust the whole "PD machine" in the medical community. They know so little about tremor, but if you look at current research and theory is that ET and PD are different points on a spectrum disorder for some of us. Why? They no have brain scans of people with E T who show signs of slowness and tremor worsening but no loss of dopamine. There is also a Fragile X Ataxia premutation that presents as PD...patients respond to l-dopa and have dyskinesia, but on PET scan, no loss of dopamine!

What I have learned. ET most always presents in both hands and is a fine back and forth more a sideways motion. it can be action or postural (reaching for remote control) but does not ease up on using hand. PD is usually opposite; tremor is at rest only but hands do not shake when you use them. I now have all types of tremor; my hand still shakes when I use it. Oh another way to differentiate an ET from a PD tremor. HOld your hands in front of you. If it is a PD tremor, the shaking will subside for a few seconds and then start up again. This is the most recent development in revealing a PD tremor. Pretty darn scientific, huh?

Incidentally, I used Inderal (Propanalol) for the five years I had ET. It worked well even on the resting tremor of my new PD diagnosis unless the med had worn off or I was extremely nervous or anxious. I have had PD then essentially ten years, Inderal does work for my PD tremor. Mainly it suppresses "off" tremors. There is also research going back a ways that Inderal does work for PD tremor in some, so your doc needs to do a literature search before making claims. Sorry to sound harsh but doctors can harm when they claim to know something that they don't which is what happened when I was pregnant my first year of PD diagnosis. Talk about stopping meds quickly; it was hell....

I can send you citations if you like but this is just what I have retained. You can find scads of articles on tremor on PubMed.

What you have been through is the very essence of why we should each be given a SPECT scan upon diagnosis. Too many other things look like PD.

Best.

Laura

works well for me when I'm teaching and need to stand in front of a class of (hopefully) eager learners. inderal's use is well documented among classical musicians to ease performance nerves. 10-20 mg seems to do the trick.

jon

Problem is you can have mixed tremors (not a formal term, just my way of calling it).

I have a slight resting tremor on my right hand since I was diagnosed a couple of years ago (the SPECT is quite clear in this, I could clearly tell something was wrong on my brain's left side). This tremor is always there.

But I always tell my neurologist that my worse secondary PD symptom is anxiety. I have clearly noticed higher anxiety doing my job (which is not a life or death job, just business management); and even though I realize that my response is disproportionate I can't avoid it. In those situations I have tremor in both of my hands. This tremor is reduced if I take propanolol.

I think (another hypothesis, I'm not a doctor) that the dopamine / glutamate unbalance in PD may be a cause for anxiety.

Thank you all so very very much for the input. It seems the tendency to dismiss or flippantly diagnose based on tiny bits about this tremor which is fading as I reduce sinemet. I don't see why they're diagnosing anything while I'm still taking sinemet since it caused (apparently all of my symptoms).

I'm trying to find some logic before I am diagnosed AGAIN before I get off sinemet. The very same drug with millions of internet hits describing the exact symptoms I have as WITHDRAWAL.

Rather frustrating to have withdrawal diagnosed as a whole new disorder. I guess I don't get the point of diagnosing anything until we get to the next leaping point, meaning me being OFF sinemet. I have so many carts before my horse that we aren't going anywhere fast.

I do very much still need comments about tremor and what works for you out there with experience. I keep finding much of what the neuros are telling just is NOT TRUE with regard to the tremor. Seeing as I'm a bit fed up with that whole misdiagnosis bit I'm getting a little tired in the rush to diagnose exp when half these guys don't have a clue. The chemical dependency doctor told me I was must be personally attached to the sinemet and inventing the withdrawal to stay on. You're kidding right? Between this guy and the 70% that wonder why I want to stop I am starting to think the comparison to the big tobacco cover-up ain't so far from the truth. Sinemet is so expensive-it's the oldest drug for PD out there-and now a shortage of it??? hmmmmmmm.

ET is calmed by a drink or two of alcohol, PD tremor is unaffected by alcohol.

A resting tremor can be seen by laying both hands in the lap, with the arms completely relaxed. In my early years, I could stop the tremor by relaxing very completely, but it returned within a few seconds, depending on how medicated I was. Now, on Sinemet and a dopamine agonist and Amantadine and Cymbalta), I almost never see it except under stress (like watching the battle at Minas Tirith in The Lord of the Rings).

I have known several very early onset people who said they started with ET and then it became PD tremor after a few years.

There are hundreds of disorders that tremor is a symptom of. Just because someone shakes or taps or quivers doesn't mean they have PD or ET.

Doctors have told me that tremor is the most intractable symptom of PD, an they don't know what causes it or how it works--unless someone has found out in the last six months, the recent speed of basic science discoveries being what it is.

Yes, I have read somewhere that cerebellar ataxia and PD can be mistaken for each other, and there seem to be different varieties of ataxias, just as there are apparently many forms of PD. It's amazing anyone gets diagnosed at all, considering that we still don't know the basic science of what causes or perpetuates PD. They have to have theories/hypotheses to test, and then the results have to be replicated by other researchers doing the same experiment, yadda yadda, but that's how we get scientific results and not just stories. Stories are valuable, but don't generally lead to a rigorous line of reasoning.

Spect scans have been considered unreliable for many PWPs and are very expensive. I don't have time to check this out, but maybe someone else knows more of the facts or conjectures.

Personally, I think that everyone who shakes should have their vitamin D3 level checked. Without heavy supplementation (or what used to be considered heavy), my legs shake and internal tremors curl me up until I can't walk, sometimes not even with a cane. I am careful to follow doctors orders on dosage, because too much can be as bad as too little. I can always ask for another blood level test if I don't think I'm getting enough.

Oh yes, almost forgot, I read somewhere that a PD tremor is usually about 5-7 Hz (cycles per second). Don't know how generally true or false that may be.

Now you know the entire contents of the top of my head, and I have to sleep to get it refilled.

Best of luck,
Jaye

I find this very interesting. I was found to be low on D3 by my endochrinologist several years ago. I had not been taking the supplement the last few years just do to stress from divorce and the cost etc. Just one more thing to deal with. I'll ask for this next round of blood work to include D and see if I am still low. Being very fair I DON'T do sun well so "getting" more sun isn't an option for me.

Thanks for the very detailed info everyone. This is just what I need.