Dave, my best friend had botox injections in muscles of the forearm, which completely relieved her hand tremors. She saw a neurologist who would find the muscle causing the tremor using a machine called a rehapiano. It would last usually for four months. You are really in the middle of it. Better days ahead.
what a moron that Neuro is. i'm glad you are looking for a new Neurologist. ALWAYS keep looking until you find one who will help you. he's jealous he can't charge you more money for something that won't work. d 🏳️🌈
Unfortunately, I have an appt with this dude on 7/2 - I need to keep rx’s for the useless Propranolol ER 60 mg and Valium 10 mg (at night) to attempt to reduce the tremors. Doesn’t work well at all, but it’s better than nothing.
Alcohol helps, and as much as I’d love to drink all day, I don’t think my patients would like to be seen by a provider who smells like a brewery!! Maybe a vodka every 1-2 hrs?!!
I’m wanting to get info on the TAPS device - it zaps afferent nerves in the forearm. It’s something that is worn on the lower forearm. It’s supposed to be >70% effective. It was just approved for coverage by MC last week. Apparently it is a 10K+ device.
If this dude even acknowledges it, the thought of having to go there to have the device calibrated, which is a several hour/days time-frame, is scary. I can’t imagine they will know anything about it.
I’ve seen him 3-4 times since moving to FL. Initially he was very anti-DBS or the MR-guided procedure. At my last visit, he gave me a referral to a Neuro-surgeon for eval of one of the above 2 procedures.
Asked how he came up w/this guy, is he an expert in this field, ‘I refer all my pts to him. He’s a good guy’!! I don’t care if he’s a jerk, as long as he is good.
Looked up the neurosurgeon’s reviews - I would not take my now dead dog to this guy!! Also has 2 med-mal suits against him!!
I don’t know whether it’s better to self-refer or get a referral from him for Mayo Jax.
I have had ET in the left hand since the early 90's. I was prescribed Metroprolol back then. Worked well until recently. Saw a neurologist about it in March of 2023. He diagnosed me with Parkinson's and said that the dr who told me it was ET was wrong. I had no other symptoms of Parkinson's ( no mobility issues or anything like that, just the tremor). Started me immediately on meds (Levocarbdopa). Didn't really work so when I saw him in June he upped the amount. Again didn't really work. Saw him in December, this time with a long list of symptoms. They matched with most of the same symptoms for Parkinson's except for the rapid cognitive functions decline (October to December) so I figured who better to see than the neurologist who first diagnosed me with Parkinson's. When I tried to tell him what I had been experiencing since October, he shut me down. He refused to even listen to what I had to say. All he kept repeating was "I am here for your tremor". After about 5 or 6 trys to tell him what I had been experiencing and him repeating the above, he asked if he could examine my left hand ( that's the one that had the tremor). I said "No, thank you" and walked out. It started me wondering if I actually had Parkinson's. This has sent me on a, so far 7 month journey, of seeing dr after dr, with each one focusing on only one of my symptoms instead of putting them all together. I spent the first 2.5 months trying to get a dr to listen to all of my symptoms. Many would listen to the first couple and then refuse to hear anymore unless I made another appointment. I even had a few who tried to walk out of the exam room as I tried to tell them my symptoms. I even had to be the one to ask for a referral to a specialist. Not once did they make the suggestion about seeing a specialist, except for one who suggested that I see a counselor. I finally got refered to a hospital clinic who was well known for diagnosing and treating cognitive impairments. He finally confirmed that I didn't have Parkinson's and gave me a preliminary diagnosis of Mild Cognitive Impairment caused by Lewey Body Disease or Alzheimer's and is doing more testing to confirm which one. Basically all I am trying to say is trust your gut. Seek out second opinions if you don't trust that the first one was right. If the dr doesn't really answer your questions or doesn't want to hear what you have to say, walk away and find another. It's your right as a patient.
I have had ET in the left hand since the early 90's. I was prescribed Metroprolol back then. Worked well until recently. Saw a neurologist about it in March of 2023. He diagnosed me with Parkinson's and said that the dr who told me it was ET was wrong. I had no other symptoms of Parkinson's ( no mobility issues or anything like that, just the tremor). Started me immediately on meds (Levocarbdopa). Didn't really work so when I saw him in June he upped the amount. Again didn't really work. Saw him in December, this time with a long list of symptoms. They matched with most of the same symptoms for Parkinson's except for the rapid cognitive functions decline (October to December) so I figured who better to see than the neurologist who first diagnosed me with Parkinson's. When I tried to tell him what I had been experiencing since October, he shut me down. He refused to even listen to what I had to say. All he kept repeating was "I am here for your tremor". After about 5 or 6 trys to tell him what I had been experiencing and him repeating the above, he asked if he could examine my left hand ( that's the one that had the tremor). I said "No, thank you" and walked out. It started me wondering if I actually had Parkinson's. This has sent me on a, so far 7 month journey, of seeing dr after dr, with each one focusing on only one of my symptoms instead of putting them all together. I spent the first 2.5 months trying to get a dr to listen to all of my symptoms. Many would listen to the first couple and then refuse to hear anymore unless I made another appointment. I even had a few who tried to walk out of the exam room as I tried to tell them my symptoms. I even had to be the one to ask for a referral to a specialist. Not once did they make the suggestion about seeing a specialist, except for one who suggested that I see a counselor. I finally got refered to a hospital clinic who was well known for diagnosing and treating cognitive impairments. He finally confirmed that I didn't have Parkinson's and gave me a preliminary diagnosis of Mild Cognitive Impairment caused by Lewey Body Disease or Alzheimer's and is doing more testing to confirm which one. Basically all I am trying to say is trust your gut. Seek out second opinions if you don't trust that the first one was right. If the dr doesn't really answer your questions or doesn't want to hear what you have to say, walk away and find another. It's your right as a patient.
My goodness! You have been through the mill, and back, so to speak! I sure can relate to the difficulties about getting the correct neurological diagnosis! It took my having a serious fall, resulting in a concussion, and blunt force trauma, where I froze in place, and fell like a stiff
board, and after 5 years, of progressing symptoms, that I was finally diagnosed with Parkinson’s Disease. Hang in there! Like the saying goes, ‘patience is a virtue’!
Unfortunately, I have an appt with this dude on 7/2 - I need to keep rx’s for the useless Propranolol ER 60 mg and Valium 10 mg (at night) to attempt to reduce the tremors. Doesn’t work well at all, but it’s better than nothing.
Alcohol helps, and as much as I’d love to drink all day, I don’t think my patients would like to be seen by a provider who smells like a brewery!! Maybe a vodka every 1-2 hrs?!!
I’m wanting to get info on the TAPS device - it zaps afferent nerves in the forearm. It’s something that is worn on the lower forearm. It’s supposed to be >70% effective. It was just approved for coverage by MC last week. Apparently it is a 10K+ device.
If this dude even acknowledges it, the thought of having to go there to have the device calibrated, which is a several hour/days time-frame, is scary. I can’t imagine they will know anything about it.
I’ve seen him 3-4 times since moving to FL. Initially he was very anti-DBS or the MR-guided procedure. At my last visit, he gave me a referral to a Neuro-surgeon for eval of one of the above 2 procedures.
Asked how he came up w/this guy, is he an expert in this field, ‘I refer all my pts to him. He’s a good guy’!! I don’t care if he’s a jerk, as long as he is good.
Looked up the neurosurgeon’s reviews - I would not take my now dead dog to this guy!! Also has 2 med-mal suits against him!!
I don’t know whether it’s better to self-refer or get a referral from him for Mayo Jax.
it's always your choice. but if you wouldn't take your dead dog to him. then I WOULD NOT go to him either. keep looking. in the meantime self-refer to Mayo Jax. also i did not notice anything about the DBS. (Deep Brain Stimulus). or the new one. i can't remember the name. they use Radio waves. both are worth looking into. Mayo Clinic should know the name of that one. in the mean time i'll keep checking for that one too. Good Luck, Daniel 🏳️🌈
The DBS and MR focused ablation have too many issues - they ain’t ready for prime-time yet!
Last night I self-referred to Mayo-Jax. This a.m. I got a call from the scheduler, I was sooooo excited, until she told me that not only are there no appointments available for pts with ET, there is nothing available on the waiting list - i can’t even be added to it!!! Totally bummed.
I asked about 2025 - their schedule isn’t open that far in advance.
She said I can try again. I’ve put it in my phone to write to them on the first of every month. I will skip July for obvious reasons.
If you or anyone knows of a non-Mayo MD, I’m willing to look at them. I like (on paper) the Movement Disorders Clinic at UFL in Gainesville.
I’ve been to the Chief of Movement Disorders at Emory. Got an excellent physical because he had a medical student with him. Gave me an rx for Primidone, with caveat don’t drive or drink wine. Yeah, not happening.
Tried another Movement Disorder doc while still in GA. May need to drive up and see him; though if I get an rx for the Cala TAPS device on Tuesday 7/2, I won’t need a Neuro for a while.
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Hi lmayo I've have benign tremor.im taking gabpentin I found it makes it less severe.
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2 Reactionshow long have you had this benign tremors? and how much Gabapentin do you take?
I have read a lot of journal articles on Botox in the arm muscles for ET of right hand.
Brought some to Neuro who went crazy, telling me this is impossible, it’s a neuro thing not an ‘arm’ thing!!!
Needless to say, I’m looking for another Neurologist.
I live ~2 hrs from Jax Mayo. Does anyone have any recs for a doc who specializes in ET?
TIA,
K
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4 Reactionswhat a moron that Neuro is. i'm glad you are looking for a new Neurologist. ALWAYS keep looking until you find one who will help you. he's jealous he can't charge you more money for something that won't work. d 🏳️🌈
Hey Danny,
Unfortunately, I have an appt with this dude on 7/2 - I need to keep rx’s for the useless Propranolol ER 60 mg and Valium 10 mg (at night) to attempt to reduce the tremors. Doesn’t work well at all, but it’s better than nothing.
Alcohol helps, and as much as I’d love to drink all day, I don’t think my patients would like to be seen by a provider who smells like a brewery!! Maybe a vodka every 1-2 hrs?!!
I’m wanting to get info on the TAPS device - it zaps afferent nerves in the forearm. It’s something that is worn on the lower forearm. It’s supposed to be >70% effective. It was just approved for coverage by MC last week. Apparently it is a 10K+ device.
If this dude even acknowledges it, the thought of having to go there to have the device calibrated, which is a several hour/days time-frame, is scary. I can’t imagine they will know anything about it.
I’ve seen him 3-4 times since moving to FL. Initially he was very anti-DBS or the MR-guided procedure. At my last visit, he gave me a referral to a Neuro-surgeon for eval of one of the above 2 procedures.
Asked how he came up w/this guy, is he an expert in this field, ‘I refer all my pts to him. He’s a good guy’!! I don’t care if he’s a jerk, as long as he is good.
Looked up the neurosurgeon’s reviews - I would not take my now dead dog to this guy!! Also has 2 med-mal suits against him!!
I don’t know whether it’s better to self-refer or get a referral from him for Mayo Jax.
Any thoughts?
Thanks again, k
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3 ReactionsI have had ET in the left hand since the early 90's. I was prescribed Metroprolol back then. Worked well until recently. Saw a neurologist about it in March of 2023. He diagnosed me with Parkinson's and said that the dr who told me it was ET was wrong. I had no other symptoms of Parkinson's ( no mobility issues or anything like that, just the tremor). Started me immediately on meds (Levocarbdopa). Didn't really work so when I saw him in June he upped the amount. Again didn't really work. Saw him in December, this time with a long list of symptoms. They matched with most of the same symptoms for Parkinson's except for the rapid cognitive functions decline (October to December) so I figured who better to see than the neurologist who first diagnosed me with Parkinson's. When I tried to tell him what I had been experiencing since October, he shut me down. He refused to even listen to what I had to say. All he kept repeating was "I am here for your tremor". After about 5 or 6 trys to tell him what I had been experiencing and him repeating the above, he asked if he could examine my left hand ( that's the one that had the tremor). I said "No, thank you" and walked out. It started me wondering if I actually had Parkinson's. This has sent me on a, so far 7 month journey, of seeing dr after dr, with each one focusing on only one of my symptoms instead of putting them all together. I spent the first 2.5 months trying to get a dr to listen to all of my symptoms. Many would listen to the first couple and then refuse to hear anymore unless I made another appointment. I even had a few who tried to walk out of the exam room as I tried to tell them my symptoms. I even had to be the one to ask for a referral to a specialist. Not once did they make the suggestion about seeing a specialist, except for one who suggested that I see a counselor. I finally got refered to a hospital clinic who was well known for diagnosing and treating cognitive impairments. He finally confirmed that I didn't have Parkinson's and gave me a preliminary diagnosis of Mild Cognitive Impairment caused by Lewey Body Disease or Alzheimer's and is doing more testing to confirm which one. Basically all I am trying to say is trust your gut. Seek out second opinions if you don't trust that the first one was right. If the dr doesn't really answer your questions or doesn't want to hear what you have to say, walk away and find another. It's your right as a patient.
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Helpful -
Hug
3 ReactionsMy goodness! You have been through the mill, and back, so to speak! I sure can relate to the difficulties about getting the correct neurological diagnosis! It took my having a serious fall, resulting in a concussion, and blunt force trauma, where I froze in place, and fell like a stiff
board, and after 5 years, of progressing symptoms, that I was finally diagnosed with Parkinson’s Disease. Hang in there! Like the saying goes, ‘patience is a virtue’!
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Like -
Helpful -
Hug
2 Reactionsit's always your choice. but if you wouldn't take your dead dog to him. then I WOULD NOT go to him either. keep looking. in the meantime self-refer to Mayo Jax. also i did not notice anything about the DBS. (Deep Brain Stimulus). or the new one. i can't remember the name. they use Radio waves. both are worth looking into. Mayo Clinic should know the name of that one. in the mean time i'll keep checking for that one too. Good Luck, Daniel 🏳️🌈
Hey Danny,
The DBS and MR focused ablation have too many issues - they ain’t ready for prime-time yet!
Last night I self-referred to Mayo-Jax. This a.m. I got a call from the scheduler, I was sooooo excited, until she told me that not only are there no appointments available for pts with ET, there is nothing available on the waiting list - i can’t even be added to it!!! Totally bummed.
I asked about 2025 - their schedule isn’t open that far in advance.
She said I can try again. I’ve put it in my phone to write to them on the first of every month. I will skip July for obvious reasons.
If you or anyone knows of a non-Mayo MD, I’m willing to look at them. I like (on paper) the Movement Disorders Clinic at UFL in Gainesville.
I’ve been to the Chief of Movement Disorders at Emory. Got an excellent physical because he had a medical student with him. Gave me an rx for Primidone, with caveat don’t drive or drink wine. Yeah, not happening.
Tried another Movement Disorder doc while still in GA. May need to drive up and see him; though if I get an rx for the Cala TAPS device on Tuesday 7/2, I won’t need a Neuro for a while.
Thanks for all your help!
Karen
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3 ReactionsPlease keep in touch about your search for new neurologist. Take care.
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2 Reactions