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.
i'll tell you to keep looking for a good Neuro. you don't want to be caught off guard. and then playing catch up. that's a waste of valuable precious time. OK?? d 🏳️🌈
I guess all the stenosis and crap associated w/being a nurse since 1976! I was a hospital-based diploma grad initially. In SINY/NJ, all the hospital SON were Catholic nun ran. I was used to this model!!
Went to Jersey City State for my BSN, part-time over ~10 years.
Went to Emory for grad school. 2 yrs and out!
I swear, the nursing shortage is due to us eating our young!! While going to grad school, I cut back to weekends in NICU in one of the highest delivery hospitals in the US. No support. All women my age or older. All I heard was “I could have been an NP if I wanted to go back to school, why would I”, and other equally unsupportive statements. I was 38’ish at this point. The younger girls were much more supportive.
Anyway, 28 yrs later, I’ve been a CPNP. I’m still working. Now it is strictly in a Locum Tenens status. I try for the shortest assignment - 1 mo is ideal, but never more than 4 mo. I never work Wednesdays, so that break does help.
Fortunately I have been retired for 4 years now. Since then my tremors have escalated, especially in the past two years. I have not had to deal with a computer for a while. I do a ton of texting in light of the fact that I am completely deaf in one ear with declining hearing in the other, so it is difficult for me to hear on the phone. I just slowly put it out there one letter at a time. Sometimes I wonder if my tremors are getting worse simply because I do not have to use my hands like I used to. I have a horrible time writing now. When I was working, I wrote and typed all of the time. In fact, back in those days, my most annoying trait was that my head would bob horribly when I talked on the phone, which was a lot. It was very much noticed by my coworkers. I remember my boss heavily encouraged me to go the doctor to see if I had Parkinsons. That was when I was officially diagnosed with essential tremor about 14 years ago.
This is going to sound crazy, but it works somewhat for me. The only advice I have is to create some type of distraction for yourself. I have found that if I am not as focused on the task that makes me shake, I seem to do better. The more I try to focus on not shaking, the more I shake. It becomes an anxiety sort of thing.
For example, if I am focusing on putting on makeup, I play some type of podcast and try to focus on that instead. If I am texting, I can focus on a television program. If you are typing on a keyboard, try playing some of your favorite music in the background. Try to focus on the tune instead of your hands. Hopefully you can come up with your own distractions, and see if it helps. I hope all of that made sense.
I also discovered that distraction helps. Listening to music while I write or draw, particularly something with a good rhythmic beat. It definitely lessens the tremors. I thought I found the answer when I started a low dose of Primidone, my handwriting and drawing with pen and ink were fantastic, unfortunately for a very short time. I hope you have figured something out to help your typing.
Yes, I have. It wakes me up out of a sound sleep. I thought it was my Shih-Tzu and that he was cold and shaking. It felt like my bed was vibrating. I would cover him up and he'd proceed to climb right back from underneath that blanket. He went to the vet and got a major, very expensive work-up, only to find out there is nothing wrong with him!!!!
Then I'm laying there in the middle of the night sitting up to cover him up for about the 6th time and when I laid back down, I could feel the shivering in my torso. I went through the "it can't be me scenario," until I started really honing in and laid my hand or foot lightly on him, only to realize, no shaking there, then got out this computer and found out that internal tremors are a thing.
I am going to start keeping a log of what I am eating, because this seems to get worse when I eat something that produces horrific bloating. With severe gastroparesis that is almost anything, but I do feel this is coming from my digestive tract. I have an artificial aortic valve and I'm getting that checked November 18th to make certain it isn't failing.
Do you feel there is anything causing yours?
I have temors now after having several small strokes from connective tissue disease... mostly hands and torso.. hope you can find your answers.. there's nothing to stop mine though..
I have temors now after having several small strokes from connective tissue disease... mostly hands and torso.. hope you can find your answers.. there's nothing to stop mine though..
I am sorry to hear that. I am just wondering if you have ever been in a position where you can try accupucture or massage for the nerve damage. You would have to get a doctor to refer you to have it paid for, otherwise like everything else the costs just keep going up when it comes out of your own pocket. I haven't been back to my accupuncturist since covid hit, but when raking and leaf blowing ends I will be making another appointment to see if she can help with essential tremors. I can almost bet her answer will be, YES.
Connect
Connect
Like
Helpful
Hug
Hey AH,
Unfortunately not only can I not make an appointment at Mayo Jax, I can’t get on the waiting list!
I filled out the request form Thursday night. Received a phone call Friday morning. I was so excited when Mayo came up on my phone.
The excitement quickly evaporated as the call went on.
She said all I can do is to keep applying. I have it in my phone to reapply on the first of every month.
Do you know a good movement disorder Neurologist, that isn’t affiliated with Mayo?
Have a great week-end,
Karen
i'll tell you to keep looking for a good Neuro. you don't want to be caught off guard. and then playing catch up. that's a waste of valuable precious time. OK?? d 🏳️🌈
From your lips to God’s ears!! It doesn’t look like I’ll find a Neuro for my ET. Maybe if I had a different dx I would be seen?
Do you know anyone - I don’t care if they belong to Mayo or not at this point!
Thanks,
Karen
-
Like -
Helpful -
Hug
2 ReactionsKaren, i know a good one. mine. but you don't or can travel to Northern Michigan from FL. not affiliated with Mayo. d
LOL, no I can’t! Thanks anyway.
I like the Ortho that did my lami/fusion.
I guess all the stenosis and crap associated w/being a nurse since 1976! I was a hospital-based diploma grad initially. In SINY/NJ, all the hospital SON were Catholic nun ran. I was used to this model!!
Went to Jersey City State for my BSN, part-time over ~10 years.
Went to Emory for grad school. 2 yrs and out!
I swear, the nursing shortage is due to us eating our young!! While going to grad school, I cut back to weekends in NICU in one of the highest delivery hospitals in the US. No support. All women my age or older. All I heard was “I could have been an NP if I wanted to go back to school, why would I”, and other equally unsupportive statements. I was 38’ish at this point. The younger girls were much more supportive.
Anyway, 28 yrs later, I’ve been a CPNP. I’m still working. Now it is strictly in a Locum Tenens status. I try for the shortest assignment - 1 mo is ideal, but never more than 4 mo. I never work Wednesdays, so that break does help.
Take care,
K
I also discovered that distraction helps. Listening to music while I write or draw, particularly something with a good rhythmic beat. It definitely lessens the tremors. I thought I found the answer when I started a low dose of Primidone, my handwriting and drawing with pen and ink were fantastic, unfortunately for a very short time. I hope you have figured something out to help your typing.
John hopkins has been good for me so far. He's helped me with having lots of strokes.
Yes, I have. It wakes me up out of a sound sleep. I thought it was my Shih-Tzu and that he was cold and shaking. It felt like my bed was vibrating. I would cover him up and he'd proceed to climb right back from underneath that blanket. He went to the vet and got a major, very expensive work-up, only to find out there is nothing wrong with him!!!!
Then I'm laying there in the middle of the night sitting up to cover him up for about the 6th time and when I laid back down, I could feel the shivering in my torso. I went through the "it can't be me scenario," until I started really honing in and laid my hand or foot lightly on him, only to realize, no shaking there, then got out this computer and found out that internal tremors are a thing.
I am going to start keeping a log of what I am eating, because this seems to get worse when I eat something that produces horrific bloating. With severe gastroparesis that is almost anything, but I do feel this is coming from my digestive tract. I have an artificial aortic valve and I'm getting that checked November 18th to make certain it isn't failing.
Do you feel there is anything causing yours?
-
Like -
Helpful -
Hug
3 ReactionsI have temors now after having several small strokes from connective tissue disease... mostly hands and torso.. hope you can find your answers.. there's nothing to stop mine though..
I am sorry to hear that. I am just wondering if you have ever been in a position where you can try accupucture or massage for the nerve damage. You would have to get a doctor to refer you to have it paid for, otherwise like everything else the costs just keep going up when it comes out of your own pocket. I haven't been back to my accupuncturist since covid hit, but when raking and leaf blowing ends I will be making another appointment to see if she can help with essential tremors. I can almost bet her answer will be, YES.
-
Like -
Helpful -
Hug
1 Reaction