Your profile lists you in the DC area. Given this (and hopefully you have decent insurance), you should be able to find a good neuro at one of the major hospitals in the area. This isn't something your local GP can deal with.
In regards to getting someone to take you seriously, try keeping a symptom diary. Note how you feel when you get up, how bad the tremors are, and what your emotional state is. Track what you do and how your body does during the day. Present this to your doctor at your first visit.
Also, even if (or especially if) you can't get your medical records, write up what you do know - diagnoses and medications, what trials and errors your doctors have had, etc. Then create a special section detailing the symptoms you are concerned about. I did this because I lived in four states in four years at one point and couldn't track down my doctors. As a result, my neuro realized that I have multiple neuro issues going on that he has to deal with.
I am in DC and have insurance, but sadly the major hospitals have actually been the worst about it. GW's where I usually go, and the guy who is apparently the best neuro in the city is one of the ones I've had the most trouble with.
Thanks for the suggestion about the symptom diary and writing up the additional records. It's something I keep starting and failing to follow through on, so I need to get better about that.
I don't know if you have a significant other or whatnot, but I take my husband with me to all of my appointments as he tends to notice the severity of my ET more than I do so is able to answer those questions to the Dr more than I can. Not that that really helps your main issue of finding a dr, but anyways.
My partner goes with me to all my appointments, but doctors tend to ignore him and assume he's my roommate or something. Ahhh the joy of being a gay couple, even in a nice liberal place that recognizes our marriage...
Getting one to take you seriously might be the hardest part. Do you have insurance that you can self-refer? If so, you might want to look into practices that specialize in Parkinson's and movement disorders. Sometimes a general neurologist isn't enough--you need a specialist. There probably are medications you can take that will help, but yeah, you need to get yourself to a specialist in movement disorders, not a general neurologist. In my experience, general neuros really have no idea what they're doing when it comes to the 'zebras' they see
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The guy I had seen a few times is apparently one of the best tremor specialists on the East Coast, but so far I'm not impressed. My partner is looking at the insurance info tomorrow, but I think I can self-refer on this plan (which is new to me, I'm used to needing the all-important GP stamp of approval). So I need to poke around there and see who I can see, as it were. I'm not used to even having a self-refer option so I tend not to think about it first.
As for the symptoms, I've never taken any of the meds you mentioned, which is good - right?
Best tremor specialist and you're getting that kind of reaction? Yeuck. I'm not sure if you could, but if you're East Coast...how far is New York from you? Since you can self-refer, you might want to try to get in to see Dr. Cheryl Waters or Dr. Stanly Fahn at Columbia University Medical Center. Only if it's not too far for you to go--and insist on them if you do (the receptionist is scary). I went there and saw Dr. Frucht (from CALIFORNIA), and he had nothing new to say to me that I hadn't already heard, which after a cross-country flight, I can tell you was very disappointing. Fortunately, however, I've found doctors that take me seriously
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New York is about 3.5-4 hours away, but it's not prohibitive; we get up there a few times a year for fun, so I can certainly get up there if it's for a good medical reason.
The rigidity and nerve pain are what make me think it's not ET, too. I wasn't intending to focus on tremor specialists, that's just who I keep getting referrals to, and when I try to schedule outside of that the department just keeps shoving me back to the ET guy.
I've done some research, but I'm useless when it comes to understanding medical issues. My partner's a medgeek, so usually he researches symptoms and disorders all night, then pokes me awake to tell me what he's found. Basically everything I've found indicates that either a) I have two different things going on simultaneously because they're two very different sets of symptoms, or b) I'm crazy and making things up.
Man, talk about a trip down memory lane... for me, it wasn't the doctors that pissed me off. It was the people around me constantly telling me I was stressed, and it was all in my head. Sorry guys, I had the opinion of three different doctors - it ain't stress
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They put me on primidone originally, which stopped the tremors for...oh, maybe two months, and screwed up my ability to walk royally. I was lurching around like Frankenstein, and then it stopped working anyway and the tremors just got worse. Might be worth mentioning propranolol though, see what they say.
It's contraindicated for people with asthma. I had asthma pretty bad growing up, but my doc seemed convinced that there were tremors in my airways causing it. The first pill was the scariest, suffice to say, but it worked.
The pros of propranolol seem to vastly outweigh the cons. Given your doctor's tendency to call it anxiety with propranolol treats exactly that, I'm surprised they never suggested it to you. It treats tremors, it lowers blood pressure (dangerously so, on occasion), reduces your heartbeat, reduces anxiety, and basically keeps you calm at all times. On the other hand, you're calm ALL the time - nothing excites you. Adrenaline rushes don't exist. You can push me off a building (or a bridge with a bungie attached) and I probably won't react. And the worst one: be prepared to forget absolutely everything. Long-term memory is usually OK if anything ever gets there, but short-term is shot. Keep a notepad and write everything down; you'll be just like the guy in Memento without all the tattoos :)
Many movement disorders have similar symptoms (Tremor, stiffness, pain, etc.) So while all of this sounds familiar, it looks like you'll need that devoted doctor who will take you seriously.
Is Johns Hopkins an option for you? I've heard they have a pretty good movement disorder clinic.
For diagnostic purposes, keep a timeline of what doctors you have seen and when you saw them. Make note of what medications you were on (if they helped or not), what imaging you had done, etc. Someone above mentioned keeping a journal. Always bring any and all of your notes, test results, imaging with you when you see a new doctor.
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In regards to getting someone to take you seriously, try keeping a symptom diary. Note how you feel when you get up, how bad the tremors are, and what your emotional state is. Track what you do and how your body does during the day. Present this to your doctor at your first visit.
Also, even if (or especially if) you can't get your medical records, write up what you do know - diagnoses and medications, what trials and errors your doctors have had, etc. Then create a special section detailing the symptoms you are concerned about. I did this because I lived in four states in four years at one point and couldn't track down my doctors. As a result, my neuro realized that I have multiple neuro issues going on that he has to deal with.
Keep us posted!
S
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Thanks for the suggestion about the symptom diary and writing up the additional records. It's something I keep starting and failing to follow through on, so I need to get better about that.
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As for the symptoms, I've never taken any of the meds you mentioned, which is good - right?
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The rigidity and nerve pain are what make me think it's not ET, too. I wasn't intending to focus on tremor specialists, that's just who I keep getting referrals to, and when I try to schedule outside of that the department just keeps shoving me back to the ET guy.
I've done some research, but I'm useless when it comes to understanding medical issues. My partner's a medgeek, so usually he researches symptoms and disorders all night, then pokes me awake to tell me what he's found. Basically everything I've found indicates that either a) I have two different things going on simultaneously because they're two very different sets of symptoms, or b) I'm crazy and making things up.
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The pros of propranolol seem to vastly outweigh the cons. Given your doctor's tendency to call it anxiety with propranolol treats exactly that, I'm surprised they never suggested it to you. It treats tremors, it lowers blood pressure (dangerously so, on occasion), reduces your heartbeat, reduces anxiety, and basically keeps you calm at all times. On the other hand, you're calm ALL the time - nothing excites you. Adrenaline rushes don't exist. You can push me off a building (or a bridge with a bungie attached) and I probably won't react. And the worst one: be prepared to forget absolutely everything. Long-term memory is usually OK if anything ever gets there, but short-term is shot. Keep a notepad and write everything down; you'll be just like the guy in Memento without all the tattoos :)
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Is Johns Hopkins an option for you? I've heard they have a pretty good movement disorder clinic.
For diagnostic purposes, keep a timeline of what doctors you have seen and when you saw them. Make note of what medications you were on (if they helped or not), what imaging you had done, etc. Someone above mentioned keeping a journal. Always bring any and all of your notes, test results, imaging with you when you see a new doctor.
Good luck and keep us posted :)
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