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Superdecooper

Upcoming MDS visit for second opinion on Essential Tremor

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Dr. Okun,

I’m scheduled to go to an MDS next week for a second opinion on a diagnosis of Essential Tremor and I’m wondering what part of my medical history is significant enough to bring up with the doctor. A general neurologist examined me in September and performed a series of tests  (EEG, nerve and muscle) but didn’t really go over my medical history that closely. I already had MRIs of my brain, cervical and lumbar spine. (the spinal scans were because of a cervical fusion in 2003, lumbar scans (2017) were from an on-going bulging disc at L5S1, SI joint inflammation and osteoarthritis, and the brain scan (2015) from hypogonadism.

I went to the neurologist in September because I developed a tremor, that I only noticed when I was holding a coffee cup or reading the paper, about 2 years ago – I ignored it. My wife noticed it roughly a year ago – also ignored her. About 6 months ago I started dropping things and my handwriting became unreadable – too big and too small. The tremor is only on my dominant hand. The neurologist said I had weakness in my right side – he attributed that to arthritis, rotator cuff surgeries on my right shoulder and the cervical fusion- and weakness in my legs, which he attributed to the lumbar disc and bone spurs.

The week before the neurologist diagnosed me with ET, I developed a persistent tremor in my right index finger that is noticeable when I rest my hand on a desk, mouse, lap. I can ignore it by moving my hand position, but if I make an effort to stop it by thinking, it generally worsens and causes a full on arm tremor. I’ve also developed painful, writer’s cramp in my hand that is almost constant, and a shoulder ache that comes and goes. – when it’s present, the pain might slow my arm swing some but I’d need someone else to tell me because I can’t observe that directly. IThe problem of dropping things is increasing and while driving my right hand actually unclasp from the steering wheel, twice.

As far as any non motor symptoms go, I seem to be hitting the jackpot on a few issues- some are common to PD others shared with Essential Tremor. I have sleep apnea treated by a cpap machine, melatonin- resistant insomnia (I get about 4/5 hours until roughly 430 am), vivid dreaming, some kicking in my sleep (my wife says), and that weird sensation of almost waking up but cant move my body, vitamin D deficiency, high blood pressure, mild depression and lots of apathy, low testosterone, partial loss of smell, sensitivity to cold, and super tight hamstrings and back muscles (according to all of my massage therapists). There might be more, but I’m actively ignoring as many health problems as possible so they will go away! I'm taking meds for a blood pressure, low T, and physical therapy  and meds for arthritis pain in my joints.

So, does this sound like presentation of an Essential Tremor patient or is this closer to what you’d see in a Parkinson’s patient? Does the MDS need all this information? Should I seek a Datscan or a Sinemet challenge?

-S

Edited by Superdecooper

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I think this is all super important and should be shared with the doc and team.  This information, along with the examination in person, will tell the story.  I can't tell online, but the one sided resting tremor and some of the other symptoms would suggest a close examination for PD is warranted. 

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Hi Dr. Okun,

just read through your book, Ask the Doctor. Well done and very informative. It answered many questions.

i just wanted to follow up in this post with a report from the MDS visit. It's elsewhere on this forum, but for the sake of continuity I will just briefly summarize an update.

basically, the MDS ruled out Essential Tremor, but wasn't ready to call it PD without a Datscan, which is scheduled for early Dec., and without looking at another blood test, and past MRI results from brain and C-spine. He also decided to wait on a Sinimet challenge until after the Datscan, saying he didn't want to put me through that unless it was warranted. 

He said that my symptoms and history, combined with his exam, made him suspect an abnormal dopamine level in my brain, plus I had a slight psychogenic overlay.

Since, the visit I've developed a resting Tremor in my thumb As well as the existing resting Tremor in my index finger. Plus continuation of the other non motor symptoms as well as  ongoing writers cramp that has shrunk my right hand into the shape of a clam.  

Im hopeful that these symptoms could be something other than PD but I'm feeling ike that's probably unlikely. 

Your thoughts?

-S

Edited by Superdecooper

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I think the DAT scan will help you and your doc make the right decision and lead you to a more clear diagnosis.

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Hey Dr. Okun,

You were right about the Datscan clearing things up. Unless, i misread something it looks like PD.

The Datscan results, which show various lovely comma and dot patterns, came with the following report from the radiologist:


Findings

Images demonstrate normal tracer activity in the right caudate. Minimally decreased tracer activity in the left
sided caudate. There is moderately decreased tracer activity in bilateral putamen.

Impression

Variable degree of decreased tracer activity in the left sided caudate and bilateral putamen as described above in
detail is consistent with a deficit in dopaminergic transmission, which indicates a parkinsonian syndrome, but
cannot accurately differentiate Parkinson's Disease from multiple system atrophy or progressive supranuclear palsy. 

Clinical correlation is advised.

 

What kinds of questions should I be asking my MDS when I see him next? 

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Hey Dr. Okun,

Interesting follow up visit with my MDS.

Here's two questions i'd like you to weigh in on.

Will taking percocet yield a false positive Datscan result?

Can percocet, plus baclofen (muscle relaxer) and diclofenac (arthritis med) mask the severity of parkinsons symptoms?

Edited by Superdecooper

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I have personally not seen percocet cause a false positive DAT.  I have also not seen the other meds you list mask PD.

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Are there any studies you can point to on the impact of Percocet or other narcotic pain relievers on Datscan results. 

My MDS says the test results, which are not fully borne out by his clinical exam, could be a false positive caused by Percocet. 

Does the size of the comma and dot image from the Datscan reflect the severity of symptoms?

Will the disease progression become more evident as time passes. I think I remember reading something you may have written about datscans being an indicator of future problems with the disease. 

If this is so, I may decide how aggressively to treat my dopamine shortage. 

-S

 

Edited by Superdecooper

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I am not aware of any studies.  If the DAT is positive I would doubt the percocet caused any issue.

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Thanks, Dr. Okun..

Just two last questions that I need you to weigh in on...

Does the comma and dot image from the Datscan reflect the severity of symptoms?

Does the scan have any predictive value?

Edited by Superdecooper

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At this point it is a diagnostic test and more data is needed to see if quantitation can help prognosis.

The comma does not always help in severity....

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Hey Dr. Okun,

Just an update here: I've been taking Azilect since the first of the year. It seems to have improved the quality of my sleep. I'm up to 7 or 8 hours for the first time in about a year and the night sweats have diminished. Still getting the crazy dreams, but hopefully, they will go away too.

It's not having any impact on my tremor or muscle stiffness or dystonia or apathy. Should I expect Azilect to have an impact on those symptoms?

My doctor says I have a dopamine deficiency and I'm probably in the early stages of what could be PD. I'm thinking if Parkinson's medicine treats the symptoms then its probably PD. 

also, do you mind sharing your thoughts about my datscan  

Edited by Dr. Okun

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Your DAT that you sent looks abnormal so I agree with your doc.  Azilect and exercise are usually not enough to treat the symptoms of PD and you should consider dopamine or an agonist (with monitoring for impulse control issues).

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Hey Dr. O,

just an update.

I'm getting a second opinion in June, but I admit I'm getting tired of waiting for more symptoms to be under control.

The Azilect I've been taking since January seems to have had the most impact on my sleep problems with insomnia and RBD. I'm up to about 6 hours a night of sleep, with less sweating and fewer nights with vivid dreams and no more kicking in my sleep or waking up unable to move.  So that's good. 

No impact on the dystonia in my dominant right hand and no impact on the tremor or on Apathy. My doc still wants to take a wait and see approach for another 3 months. I did have a chance to talk briefly with a couple of MDS from university of Maryland at a PD conference yesterday, and both rejected the idea that Percocet would skew the results of a Datscan into being a false positive - which is what my current physician suspects since my Tremor shows some evidence of entrainment. 

-S

Edited by Superdecooper

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