I had my first 'visible' tremor in my left thumb on June 20, 2021.
Since then, 99.999999% of my tremors are "internal."
But the last two weeks... I now have 'visible'' movements/ tremors.
Still rare. Still very, very mild. But ... progressing.
I would appreciate feedback from this community on their own personal "tremor" experience.
p.s. My so-called "neuro MDS" thinks I'm nuts, I believe. He totally discounted my multiple symptoms: eyelid tremors, sensation something is in my eye, foot and leg cramps, 1000s of internal tremors daily... and now... constipation.
I'm not nuts.
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PDWarrior1900
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I think my tremor is from rigidity. Arm can’t relax and gets locked in tremor. I can sometimes swing my arm out of rigidity/ tremor. I have internal tremor too, I can sometimes move/ breathe my way out. It’s from internal rigidity.❤️🩹
when my first tremor began it was in my right foot 2014. Didn’t notice a tremor in my right hand until 2016. Only feel the occasional internal tremor since 2021.
are you going to a movement disorder doc? None of the symptoms you describe are unusual to PD. I’m not getting why he’d think you nuts? I’ve had all those symptoms/sensations (except the feeling something is in the eye).
yup, he's supposed to be a 'top doc' from cedars-sinai hospital specializing in MDS... he did give me a thorough 'standard' PD exam (lasted about 40 minutes) ... tested for cognition, gait, falling forward or backward, etc ... but he totally IGNORED the over 200 page medical history that i've been writing daily (i offered it to him on a flash drive as well as a 'summary report' printed out...).... I read his "after appointment report" ... he thinks I have "OCD"
My guess is he's reacting to your extensive notes as OCD and then dismissing the PD. Which says he's not a very quality doctor. You can have good expertise, but doctoring is an art that requires being able to listen to patients' inputs and use them. That's the old fashioned art of doctoring that has gotten fairly lost lately. It also says he doesn't put himself in the place of patients, because it is not uncommon for people having a hard time in their body, to log their symptoms extensively, or research extensively, or bury their head in the sand extensively. People react. Logging your symptoms is one of the most productive reactions.
You could have some OCD, or not. But it's rather irrelevant to the PD symptoms. People can have both. He's also missing that OCD is not about logging things extensively. Nor about having anxiety. It's about being frozen into not taking action, because of anxiety. It's about being obsessed and stuck on singular thoughts due to anxiety. He may not be very familiar with the condition. And he's not mental health expert, so he shouldn't be diagnosing.
I sound a bit edgy about listening to patients, because I'm having a similar problem. My doctor insists that I'm not having side effects that I'm having. Or that I should be trying things out without hesitating.
He wasn't there for all the ridiculous reactions I've had to meds. But quality doctors immediately respect that and work with it. I'm going to have to find somebody else.
I also find that he's not very inquisitive. I brought up the Mediterranean diet and he never heard of it being researched in PD. He had no idea how the research study that I applied to at that institution, is going. I don't know how somebody can go through so much extensive education, be in a well-respected research institution, and be uncurious.
I was diagnosed 4 years ago with PD. It took almost 2 years untill I got this diagnose. I had only internal tremors in my chest and belly and later legs but not visible. The doctors thought first it was my heart, lack of vit D, stress... I still have mostly internal tremors.
i'm not yet officially dx'd .... dumb neuro/MDS guy.... but i have thousands of very mild internal tremors in my legs, arms, left side of face has 'numbing feeling' intermittently... and eyes have problems.... ... thanks for your feedback
stay strong! i am confident a 'cure' is coming soon!
Visible left hand tremor was my first & remains my predominant symptom. Other symptoms are minor.
Try using a hot compress on your closed eyelids to give them a gentle massage. The heat will open up the meibomian glands inside your eyelid which secrete an oily viscosity agent into your tears. You can soak a face cloth in hot water to do this, or you can buy a microwaveable eye mask. Give it about 10 mins a couple of times a day. If it works you can stop, but you may need to revisit it from time to time.
I had the same experience. Internal first external afterwards still mild and it seems to happen only when I’m stressed, the external I mean… it’s barely noticeable to other people, it’s been increasing a little bit in the last few months. This is five years after my first symptoms appeared. I also found that breathing helps and relaxation of the arm. It’s when I contract the muscles for some reason, that it starts.
I am happy if I can spread the hope, we al need to keep a positive mindset! 😊 . The key for me is exercise, well distributed throughout the week with easy and hard days. Calisthenics, Power Yoga and cycling, sprinkled with walking. It goes without saying but healthy eating and attention to sleeping as well 😃
My husband had a very strange experience with tremor about 3 years before dx. He was cooking and trying to use a knife for cutting up food and his hand wouldn’t obey his directed movement. In the end after being completely frustrated he handed the task to our son. He didn’t have that same problem for a while after that but it was the first time he noticed his hand was not moving as he wanted it to and was tremoring slightly.
That was 11 years ago, he was dx in 2015. Doesn’t have internal tremors and although he does get tremor it’s not his worse symptom now.
mine started very similarly,…found dr constantini protocol of vitamin B1 helped enormously all available from Amazon vitacost etc now in my 5 th year and in contact with various people on sites such as this and Facebook for any updates or new ideas. Try Roy prospner on Facebook too , he is very knowledgeable on progression of the disease and on dr constantini protocol
My husband felt internal tremor first after an illness. ~Six months later after a second illness (Covid this time) the right hand tremor went from being barely noticeable and intermittent to fairly constant, increasing with stress, stopping just before sleep and with meditation. C/L helps with rigidity but does not eliminate tremor. Though he does not notice internal tremor anymore - the C/L seems to have stopped that. He has been enjoying meditation and exploring at what stage the tremor disappears. Update from today’s appointment: The neurologist thinks he is on a low dose of C/L for his weight (just 4 months in from diagnosis taking 3 pills of 25/100mg Sinemet) and thinks increasing dose likely to help with tremor which he will increase once the light therapy study is done. A few weeks ago he had increased to 4 pills a day for a few days without any change in symptoms, so went back to 3. Neurologist expects it to take several weeks before full effect of a change in dose is seen. She said other motor symptoms improve with a lower dose of C/L and usually a higher dose is needed before tremor sees improvement.
Visible tremors were my first and primary symptom.
Jan 2021 reemergent hand tremor when walking (PD name for hand tremor when you swing your arms while walking.)
Significant enough that I knew something was going on.
A few months later other tremors happened inside the house, in my hand, my leg and foot. Along with visible there was some internal sense, in the leg. A couple of specific face twitches show up.
Sometimes if I get the one side still, the tremor will insist on showing up on the other side.
October 2021 diagnosed with Datscan.
I never had the usual primordial symptoms. Don't have constipation.
A little bit of cloppy gate. Finger dextrerity trouble. Walking bent over. Very messy handwriting. All of those improved with medication. Twitching my eye that my doctor says was unrelated, but improved with meds.
Meds taking edge off the tremor, but it's still very present and visible..
I hold a plastic squeeze toy in my hand most of the time including when sleeping, because it stops the tremors which in turn stops yanking my shoulder into pain.
My doctor thinks I should be on more meds. So far my experience with more, destroys my sleep and leads to I think what's called dyskinesas.
In the years before I can recognize what probably was PD. It was almost all tremor-based. Ex Using a bathroom my leg would start shaking. Same as sitting in a chair when I wasn't sitting feet against the floor solidly.
Tremor dominant is supposed too often progress more slowly. I'm hoping I get slow progression.
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Ambroxol is an antihistamine. High histamine associated with PD. Low histamine associated with RLS
Tremors 101
Ugh...
Controlling tremors
What criteria was used to diagnose you had PD?
