Dystonic tremor. What am i facing?

Hello Kad @kadelmaz, Welcome to Connect. Dr. Google can spit out a lot of scary stuff when it comes to trying to figure out what your diagnosis is. I have neuropathy with numbness and no pain in my legs. I do have frequent tremors in my hands which makes it a little hard to sign my name and use the computer mouse with precision. Not sure if you found this article in your research but it does seem to provide some helpful information for learning more about the condition. Probably the best thing you can do to help yourself is learn as much as you can about the condition which I think helps when working with your doctor on any available treatments.

"Dystonic tremor: tremor in a body part affected by dystonia. This involves: tremor in an extremity or body part that is affected by dystonia, focal tremors, usually with irregular amplitudes and variable frequency (mainly less than 7Hz), and mainly postural/kinetic tremors usually not seen during complete rest."
-- Diagnosis and Management of Essential Tremor and Dystonic Tremor:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002636/
You might also find it helpful to read through the discussions and comments by other members with similar related symptoms. Here's a link that lists the discussions and comments - https://connect.mayoclinic.org/search/?search=Dystonia

You mentioned you were just sent home with no report or follow up. Are you able to request a copy of the neurologist's examination/report?

Hi Kad,
Dystonia takes many forms and everyone has different symptoms. I have had “mystery symptoms” for decades. I consulted a doctor about my left hand (non-dominant) going into severe cramps when I over use my right hand (dominant). He admitted he had no clue.

I went to chiro for decades for my neck that was too stiff for me to turn my head while driving, which can be dangerous. The chiro helped temporarily and I had to keep going back.

This year I have had sharp pain in various joints. It would go from ankle to thumb/wrist to the knee, to the hip, to the neck.

A couple weeks ago, I read on several online sites that caffeine and alcohol aggravate dystonia conditions. I gave it all up: coffee, cocoa, green tea, chocolate and all alcohol. I am doing substantially better now, which may confirm that it is dystonia.

I did not have any symptoms for more than a week, until yesterday when I had sharp pain in my knee. I iced it and it did not help. I remembered that sciatica can cause knee pain, so I iced my lower back and the pain went away. I found out online that dystonia can cause sciatica.

Bottom line, try giving up all caffeine and alcohol for a couple weeks and see if that helps. You may have some symptoms yet and check to see if they could be caused by dystonia.

Remember it is inflammation and icing can help. Ice 20 minutes 3 times a day.

Also take some supplements: Vitamin E, A, D3, and K2 taken with olive oil. They are fat soluble, not water soluble.

I do not pray for a miracle, but I do pray for guidance. Remember Jesus was a carpenter. He knows you.

kad, you may have tremor as your body's reaction to stress. Possibly with origin in autonomic nervous system. It is called psychogenic tremor, but has nothing to do with craziness or any damage to the brain. You might look into stellate ganglion block. It's an injection in the neck an office procedure said to reset the autonomic nervous system.
I hope you find resolution.

Hi gently. Thank you so much for your message. I will do some research on this

Much appreciated

searcher1,
On your stiff neck, unable to turn it. You are right, definitely a problem when driving. (Ps, be careful letting a formal American medical professional know this, they can, w/o your consent or knowledge have your license suspended. It happened to me.)
I was in 2 recreational accidents 19 years ago. Whiplash in the snow. Two rogue waves threw me out the the ocean onto a lava outcropping and summersaulted me 2x. I wished it would have just killed me.
I met a PT, with out of the box thinking. He taught me how to help with my neck. I had not been able to turn without pain or could not turn at all, for 2 yrs.
Sitting up straight, eyes open;
Leading with my eyes, look left
Then slower than slow turn neck, don't push thru the pain, stop.
with eyes leading my neck, reverse leading with eyes, slowly turn back to center.
Repeat on other side.
It took multiple times a day for 5+ weeks to really notice the difference. IT WORKED!!! When nothing else worked.
I still had other problems but, this was a BIG WIN for me. I still practice it, no lol, while on the toilet. It's simple, that's why it worked for me. 1 problem solved, 100,000 more to go. ShelleyW

kadlmaz,
How presumptuous of you, expecting a highly educated neurologist to tell you what you DO NOT have and expect him/her to give follow up instructions or tests😡
I have come to believe that expecting much out of drs., is futile. Did you get an MRI of your neck? What did it show?
I too have shaky, mostly hands, can be anywhere, anytime.
I am going to look at the info John sent. He had good stuff on this. ShelleyW

kadelmaz,
Have you tried either compression gloves (cut out finger tips) or weighted gloves, w/o fingertips?
My hands will burn too, so I use an ice pack to help with the heat and weight my hand down.
ShelleyW

Hi Shelley. Thank you for your message. You are completely correct. It was very odd to very naturally diagnose me with dystonic tremor and send me on my way. No MRI no blood tests. I went back to my GP yesterday and demanded an MRI. Only god knows when that will be offered to me.

Good evening John,

Thank you for your message and im so sorry for what you are going through. Thank you very much for the links you have send. I will read through them now.

Hi Shelley no i haven't tried any type of gloves as yet but i will defo look into this now. Thank you so much