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John in Virginia

Thoughts on my neurologist's diagnosis

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I would appreciate your thoughts on the following:

In late 2014, early 2015 I developed a tremor in my foot, which I noticed upon standing at first, but it also occurs at rest sometimes, and a tremor at rest in my hand.  The intensity of both increase quite a bit when I am stressed.  Both are on my right side.  Neither tremor is present all the time, but they are there much of the day, particularly in the arm.   I saw my primary care physician, who eventually referred my to a neurologist (nice guy, well respected) in DC.  The neurologist gave me a complete inspection for tremor and, as I have learned, gave me all the usual tests for Parkinsons (gait check, finger tapping, pull test, etc.).  His diagnosis, which he said could change over time, was that my tremor was an atypical essential tremor.  He said it was concerning because it was a resting tremor, but it wasn’t necessarily the type of tremor associated with Parkinson’s, not a pill rolling tremor, and that I had no other signs or symptoms at all of Parkinsons.  He did order an MRI, which showed no issues. I saw him again in 2017, and he confirmed no material change in my tremor and again no signs or symptoms of Parkinson’s, and stuck with his initial diagnosis.  He said he could continue to see me every six months, but suggested I self monitor and come back for further evaluation if I noticed any changes (which he said could occur in a year, 5 years, or never).  

So, here I am, a couple years later (I am 48 years old, was 45 or close to it when these symptoms began to occur), with basically the same tremor in both my arm and foot, and they basically are unchanged or at least not materially worse.  I am not noticing any other changes, except occasional pain in my right wrist (where I hold my mouse many hours a day, in what likely is not a very ergonomic position).  I have no tremor at all when I walk, that I am aware of.  I have attached some videos of my tremor when it is occurring--I believe these are typical, though the tremor can increase with intensity sometimes if I, for example, turn my hand on its side. Do you see any reason for me to see a movement disorder specialist at this point  or should I continue to monitor based on my neurologist’s judgment until something more occurs or appears?  I do plan to see the neurologist again this summer for a checkup. 

A few other issues that may or may not impact this issue.  First, I am really obese, over 300 pounds, and my PCP is of the view that a lot of my health issues, including potentially this one, would resolve upon losing a substantial amount of weight. Second, I admittedly can have some medical anxiety, and be overly concerned or convinced I am suffering from some malady. I am not sure if that impacts my tremor or not.   Third, I have long had very restless legs at night, moving them around and kicking even in my sleep, and may well have undiagnosed restless leg syndrome.  I recall my dad sitting in his recliner with his feet up in his 4os and 50s, kicking his legs around at night and complaining about them. 

Thank you for any advice you can offer.  I am happy to answer any questions or provide additional information.

Links to video:

 

 

Edited by John in Virginia
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Unilateral tremor in an arm and leg at rest is suspicious for Parkinson's and you may want to seek a second opinion at a PF Center of Excellence in your region (Georgetown and Johns Hopkins come to mind).  Also our 18004PDINFO line may help.

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Unilateral rest tremors in an arm and leg strike me as very possibly PD but I don't make diagnoses without seeing the patient and really examining and sometimes giving med trials.  A DAT  may be helpful but would not be needed if you respond to medications.

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Some follow up:  I did see my neurologist again today (not an mds), who said my motor symptoms are basically the same, but he felt some rigidity in my arm.  He is concerned, but not convinced I have crossed the line between a tremor diagnosis and Parkinson's.  He put me on a trial run of l-dopa, which he says will likely answer the question.  I will be seeing an MDS at Georgetown in September.  

A couple of questions:

1.  My symptoms are not affecting me at this point, so there is the question of whether, assuming this trial run of medication confirms a diagnosis, I start medication until quality of life is affected.  What are your thoughts on when medications should be started, and if so, what medications are typically prescribed at the outset?  If I'm functioning ok and getting by with hard exercise, should I hold off on l-dopa for the time being?  

2.  Even if the prevailing sentiment is to start some medication upon diagnosis, should I wait until I see an MDS in September so he can examine me and develop a plan of care, or take whatever my neurologist suggests between June and September? 

Thank you for your generosity of time on this forum.  

Edited by John in Virginia
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I think the levodopa trial is important to clarify diagnosis as you describe it, but remember it could take 12 weeks or more and the dose may need to be increased to 2 or more tablets per dose to be sure.  After the trial you and your doc would select the best/optimal dose and also discuss whether symptoms are affecting quality of life or if your examination suggests harm from not treating (falls, etc.).  Hope that helps.  I would work with your doc on the trial and get re-examined at various dose levels before concluding whether the medicine is helpful and I prefer to treat for many weeks....also if you decide to stop we never sop abruptly as there could be a withdrawal syndrome.

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