After a very long road, I was just diagnosed with Essential Tremor. I have been posting in the PD forum for the last year and a half or so because my first Neurologist thought I might have PD. Since my first Neuro, I saw a MDS, and today I saw my third Neurologist. He diagnosed me with Essential Tremor. I don't know what to think about any of this anymore and I am not sure that there are many people on this forum with ET. If you are around, let me know. I have a lot of questions.

Thanks,

Evonne

Hi Evonne - I had essential tremor since I was 17. I'm now 83, so it's been a long haul! in 1990, I had a deep brain stimulator put in place for my right side at the Rochester Mayo hospital with miraculous results. Ten years later I another installed for my left side which took care of head wobbles. If you have more questions about this procedure, do ask!! I'll get back to you (if I can find this page again!!

Hello, I just got a tenative diagnosis of ET. I also have a primary Dr who thought I might have Parkinson's.
I went to one neuro just this week who thinks ET.
I am going to a second neurologist in a month for another opinion.
I have been given a trial dose of Primodone to see if it helps and to possibly confirm the diagnosis.
It is very frustrating to not have answers. I have also wondered if it is MS. Right now I am hoping that the meds will help since tremors are interfering with my work etc.

I started exhibiting ET last August (may have had it far longer, but never noticed until Drs/family saw it while I recovered from a life-threatening illness). Started with hands and arms, then feet and legs, on to neck and head. Ended up with complete body involvement. Episodes were extremely painful because of the constant, rapidfire muscle contractions. While I heard a number of possible causes from medical types (from bad to life-threatening), I was oh, so lucky for a Neurologist who immediately diagnosed it, proved it out, and treated it with meds that have stopped it completely.

May I suggest a visit to:

http://www.essentialtremor.org/SiteR...4&DocName=Home

It is a tremendous resource and can link you to other resources. They even publish a magazine; "Tremor Talk". You'll find out how common (and mis- or undiagnosed) it is. You can also link off to chats for the newly diagnosed, old hands, and new types of family interactions. It is very uplifting to talk with others who know exactly what you are going through. As with here, they are so understanding, experienced, and caring. And you'll find that it is not as uncommon as we initially think. That is accurate for the diagnostic community, sadly

For me, the magic medication potion was Propanalol and Clonazepam. It may be that other things will be the answer for you, as GloryBee discussed. You don't have to live with it controlling your life, you can control it. Please feel free to ask me anything. I will certainly answer if I know the answer. My resume includes "short career as a marrionette".

I have this tenative diagnosis of ET. The weird thing is my symptoms come and go. I have had nearly two weeks with no tremor. Is this typical? I had tremor for months prior. I am going for a second opinion soon, but since I am asymptomatic I don't know if I should.

It is a puzzle, I do not understand why this tremor comes and goes. This happened once before, the tremor went away for about 2 months. Otherwise it is daily and has been going on for a few years.

First checked out for seizure, given antianxiety pills. Went to another Dr who suggested Parkinsons and now another says possible ET.


Thanks to anyone who can offer some stories.

Because you said your initial ET diagnosis came from a neurologist, and your upcoming appt is with another neuro, please follow through with it. I personally found them to be the best at pinpointing, proving, and successfully treating my ET.

Lasr August, family and staff noticed my ET while I was in a nursing home for about 5 weeks. I'd gone there directly from the hospital, where I had been for 15 days. In the hospital, I had been on a continuous morphine drip, with morphine shots every two hours. They also used add'l pain control meds, because of my extreme pain. I only had a few ET onsets, mostly in my hands/arms. My med orders didn't make it to the nursing home, or were more than they were qualified to administer.

Initially, I got only MSContin every 12 hrs and vitamins. ETs were more frequent and now included my legs. They literally raised off the bed and flailed violently in the air. Staff yelled at me to stop doing that, which of course I couldn't. Eventually, their Dr added 5mg of of Roxycodone every 4hrs. When I went home, ETs involved my entire body, and occurred daily.

No one sleeps in a nursing home; I slept for nearly 3 days solid when I got home. Then, I went to a pain Dr. He put me on reasonable pain meds (he thought) and actually saw a fullblown ET while I was there. He thought they would stop when the pain was under control, again. I still had full-body ETs, not as severe or daily, at times when the pain was too much and now when I was tired. He increased the pain meds much more. Still full-body, lessoned more (still at least 3/wk). Pain, tired, and now stress (like my nephew's murder) caused them. A tad increase in pain meds, and addition of clonazepam. Actually went 2 weeks without 1, but mostly 1-2/wk.

Off to my neurologist, and I conveniently had a bad ET- he hurt my back during his routine exam (wasn't used to all its compression fractures, severe arthritis in a variety of flavors, early on). He added propanolol in a fairly healthy dose. Pretty much stopped them. I can still get them, but we use additional clonazepam and valium during one to gently stop it. I had a fairly violent one during an EMG by my neurologist 8 days ago, but he actually talked me out of it with an all-but standup comedic performance for about 15 minutes after the test was over. I think he really could give up his day job, but I sure hope he doesn't!

The short answer after the long explanation is that I certainly think that ET can come and go. You mentioned starting a medication. maybe it's your version of my initial clonazepam? My life is ever so much better now that mine are rare. They are always unpleasant, but my experience proved they could do me in for days. I was very glad to get them confirmed, and now consider them all but a done deal.

Sorry this is so long. Writing for me is therapeutic, today. Did you have a chance to check out the Essential Tremor site from my link? You'll read about how bad they can really get. Scary, painful things. I was lucky to start and reach control in 6 months. I have learned, however, that may change tomorrow. Hope this helps.

PS - see if you can identify "triggers" when yours start again (like my pain, tired, stress). Or, see if you can remember what was going on when they happened in the past. This can help the Neurologist with what to prescribe.

Thank you for the information.
It seems there are a lot of unusual neurological symtpoms that go undiagnoses, at least from what I read on here.

It is interesting to me that my symptoms improved immediately after a CT scan for an unrelated condition. Maybe all that radioactive iodine helped somehow. In fact I have had very minimal tremors since the CT scan and they improved immediately afterwards.
The head bobbing had been so severe that I got public comments and stares about it.

My thyroid results btw were normal prior to all the CT, but since thyroid is usually associated with iodine and tremors and other neuro symptoms related to hyper and hypothryroid ism I wonder if there might be a connection.

Has anyone had ET start in leg as an internal tremor, then to hand & arm (still an internal tremor)? Upon wakening in early morning also in chest & stomach?

Mine is not only with action, also when first lay down, then subsides.

Any info appreciated.

Confused & Worried.

My ET never really goes away completely, but it does disappear to the point that I feel others do not see me shake. I can still feel it in there though. Then there are times that it gets so bad that no amount of Propranolol will stop it. This is particularly true if I am stressed about something, or when I get angry. It is like a switch is clicked on.

Richard

Hi Evonne-
l'm in my early 70's; have had ET since my late teens(my Dad also had ET) mine was pretty much controlled with Inderal up until 18-24 months ago. Gradually getting worse; l'm at the point where l'm considering DBS (deep brain stimulation) surgery. Actually came to this site looking for answers, as are you