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alsgirl2000

New to Forum, Essential Tremor but concerned

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Hi, I'm new here. I've been reading a bit for a while, but I have an appointment coming soon with my MDS and have new symptoms. I'm hoping you all could give me some pointers on questions to ask when I see him.  My history. I am currently 42 and first noticed my tremor in March 2012. I didn't worry too much about it at the time, and didn't see a neuro about it until 2015 when it had become impossible to hide.  At the time, my neurosurgeon for an unrelated condition referred me to an MS neuro who diagnosed me with Essential Tremor after two visits and put me on propranolol.  My next appointment was scheduled 6 months later. She left the hospital (a teaching hospital) and I was transferred to an MDS. I have been seeing him for two full years now and feel that he is very thorough and listens well, although he is young he is an assistant professor.

At my last appointment I happily informed him that my aunt told me she was also recently diagnosed with ET. He replied, "well that makes me feel more confident in the prior doctor's diagnosis." So it now occurs to me that I have been seeing him for two years and he has never actually diagnosed me himself, but instead following my case closely. I see him every 3 months. My last appointment he suggested I switch to the med combo propranolol and primidone.   In the meantime, since 2015 my tremor is getting increasingly worse even with meds. On a good day, the meds help maybe 50%, on a bad day like today they seemingly don't help at all.  The tremor is bilateral, but significantly worse in my left leg and hand.  Most days I have a hard time typing, texting, and can no longer eat soup/sushi or drink from a cup with one hand in addition to many other things requiring manual dexterity. It is in both hands, both legs, my voice and slightly in my head.  About a year ago I developed nystagmus in my eyes that happens randomly when shifting my eyes from one point to another. I can't make it happen in front of the dr, it's completely random. He seemed unconcerned although I did see a neuropthalmologist that also was unable to replicate it and diagnosed me with perfectly healthy eyes.

Since my last appointment (Dec 2017) I have begun dropping things. I am slightly ambidextrous so I often do things with my left hand unconsciously even though I am right hand dominant.  I have dropped things from my left hand four times, so I guess I need to stop using my left hand to pick stuff up. Three of the instances, my hand jerked and then I dropped the item I was holding. This morning I dropped a fork, no jerk this time. Maybe I hadn't gripped it tightly enough but given the last three episodes I'm paying more attention. I am also noticing a weird kind of numb sensation in my left arm and leg.  I am physically active, I do high intensity interval training 3x per week. Maybe it's related, my hips are killing me they are so tight. I have not had any issues while working out although workout fatigue can and does worsen my tremor.

I was kind of flabbergasted at my last appointment that the dr. seemingly doesn't agree with the diagnosis I was given and that I've been blindly seeing him without a diagnosis.  I plan to ask him directly at my next appointment why he hesitates to agree with my former doctor and what his diagnosis is. However, given my doctor's position, the dramatic change in my tremor, and the new symptom of dropping things I am getting more concerned. I don't know what this is. My tremor is not a resting tremor so I don't really think it is parkinson's. But my hands, particularly my left, do not function normally and even do things that don't look like essential tremor. Also I have read that ET is uncommon in the legs.  What kinds of questions should I be asking him?

 

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Does your insurance allow for a 2nd opinion (through an MDS)?    If you would feel comfortable to tell us what city and state you live in, perhaps someone on our forum could recommend an MDS to you.

Are you seeing an MDS associated with a research-based university?  It's extremely important.  It sounds like you are, which is good.

I feel so bad for you.  I can't imagine going through what you are.  And I think I might feel as you do about your current MDS.  (Just as an aside, I don't think his being an assistant professor means he is less knowledgeable.  He may be more so.  It depends on so much.  Plus the fact that he is at the hardest level to advance to the next level.  Its a real accomplishment to get there.

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Thanks Linda.  I could probably go to another Neuro without a problem. I have Cadillac insurance, thank God. I'm in Chicago, he's at U of C and is an MDS specializing in Parkinsons. I didn't mean to imply I didn't think he isn't good, just that he's rather young, maybe a few years younger than me, so perhaps more cautious than a doctor with more experience. And then I am also young so even more reason to be thorough and take a wait and see approach. I am actually thinking about the need to move to a single level home at 42.

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Great that you have the insurance that you do!  And very, very wise to start thinking about a single-level home.

Re your MDS--Something you could do is ask if you could start to be seen by a Fellow, as you would get an older, more experienced MDS's opinion, as well, since the Fellows are overseen by an MDS.  Two for the price of one, so to speak.  :-)   I'm not sure if the department you are working with offers this, but it's what has been started at Hopkins, so perhaps it's available where you are, too.

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