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John in Virginia

See an MDS or continue to monitor as per my neurologist?

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I posted a variation of this in the Ask Your Doctor forum, but thought I would post here as well while awaiting a response, to the extent those of you more knowledgeable than I may have thoughts to share.  Any replies appreciated.   

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 at least sometimes during each 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, three/four years on, 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.  I have attached some videos of my tremor when it is occurring (I did not post any of my arm or leg as they are sometimes, without the tremor).

I'm trying to decide whether to continue to monitor based on my neurologist's judgment (I will see him again this summer) or try to seek an appointment with an MDS.    


A couple of other issues that may or may not impact this issue.  First, I am 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.   I am 48 years old, 44/45 when these symptoms began to occur.

 

 

 

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Hi John,

i cant really tell from your videos, but then I'm not a doctor.  if you are very concerned, you are going to have to go to a neurologist that specializes in PD called an Motion Disorder Specialist.  

-S

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My tremor was not the typical pill rolling tremor, but it progressed from a small tremor that I could barely see in my middle finger to a full blown hand tremor in a couple of months. With no progression in three or four years, it sure doesn't sound like PD. Trust your Dr. and don't worry about PD unless it gets a lot worse or if other classic PD symptoms appear and don't go away.

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I vote for an MDS . . .  depending on their evaluation, you can return to your regular neurologist or stick with the MDS. The higher level of training and expertise can really make a difference in management of disease. Just my food for thought. 

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Hi all, thanks for the comments.  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 in September.  My symptoms are not really affecting me a this point, so there is the question of whether I start medication now or hold off on treatment until quality of life is affected.  This is scary stuff for a 48 year old dad of 3 kids and husband!

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Hi John,

if you take it now and it makes you feel better during the trial run, you could still stop taking it if you don’t feel like you want Or need meds now. But Youd have an answer i suppose and that would be helpful.  Also it still might take a while for an official diagnosis..try to take it one step at a time.  

Edited by Superdecooper

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