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Dystonic tremor. What am i facing?

Posted by kadelmaz @kadelmaz, Sep 1 2:41pm

Thank you very much for taking the time to read my post. Any information would be highly appreciated.

I am 43 years old. Around 3 years ago i noticed my hands shaking while i was at work. I am a carpenter so i work with my hands (obviously!!!). Over the last 3 years my left hand seems to have gotten worse only on movement. While resting i dont have any type of shaking. I have also noticed that any type of emotion triggers this and my whole body including my neck will shake for a while. Any type of exercise will also trigger this. Using cutlery even shows the tremor in my left hand. Last night out of the blue my right tricep muscle was spasming for a good 4 hours.

I saw a neurologist 2 weeks ago that examined me (simple body movements and postures) and has diagnosed me with mild dystonic tremor. no sign of cervical tremor. I was not given any information or a follow up. I was just sent home. I have been doing alot of online reading which is probably a mistake but what i have read is quite scary. Can anyone help me understand what i may be facing in the future. Will this potentially get worse. Does everyone with dystonic tremor get worse or can my symptoms stay as they are. Will i potentially develop twisted limbs.

Any info will help.

Thank you

Kad

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kadelmaz | @kadelmaz | Sep 3 10:40am
In reply to @searcher1 "Hi Kad, Dystonia takes many forms and everyone has different symptoms. I have had “mystery symptoms”..." + (show)
@searcher1

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.

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Hi searcher. Thank you for your message. I am sorry for what you are going through and hope the best for you.

I also drank roughly 15 cups of coffee per day. I have now cut this down to two. I haven't noticed any difference yet but i guess time will tell. Has only been 2 weeks. It was very sweet of you to mention Jesus knows me being a carpenter. That brought tears to my eyes

REPLY
1 reply
kdalda75 | @kndaustin71 | Sep 3 11:17am

Shame on the Neurologist to give you a Diagnosis....the end. Get a copy of your records and take them to another Neurologist. Then be prepared to request and expect further diagnostic work-up, ie MRI, EMG, Labs etc. Also the New Neurologist should be able to explain in full exactly what is the diagnosis, expectations effecting you, prognosis and a treatment plan. Unless we have a physician in the group.....all of this is speculation! You need medically, scientifically based information.

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searcher1 | @searcher1 | Sep 3 12:42pm
In reply to @kadelmaz "Hi searcher. Thank you for your message. I am sorry for what you are going through..." + (show)
@kadelmaz

Hi searcher. Thank you for your message. I am sorry for what you are going through and hope the best for you.

I also drank roughly 15 cups of coffee per day. I have now cut this down to two. I haven't noticed any difference yet but i guess time will tell. Has only been 2 weeks. It was very sweet of you to mention Jesus knows me being a carpenter. That brought tears to my eyes

Jump to this post

Hi Kad,
It is good that you cut back from 15 cups of coffee. I previously had 1 cup of coffee in the morning and either cocoa or green tea in the afternoon and I had the the sharp pain jumping from one place to another. I went "cold turkey" and gave it all up, including chocolates. The symptoms are gone except for the knee episode, which is fine now. I make coffee for my wife, but I look at differently now and have no interest in it knowing the pain I had. I do make hibiscus tea or lemon myrtle tea that are caffeine free and high in anti-oxidants. I would recommend going "cold turkey" for a couple weeks and see how you do.
May the Holy Spirit bless and guide you to good health.

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shelleyW | @shelleyw | Sep 3 2:09pm
In reply to @kadelmaz "Hi Shelley. Thank you for your message. You are completely correct. It was very odd to..." + (show)
@kadelmaz

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.

Jump to this post

kadelmaz,
With my own "just getting older problems" added to chronic pain from two recreational accidents, it's fair to say that I have become a whopping SOB patient ‼️It just dawned on me, who came up with the name of "patient " in the medical field??? Anyway, in my humble opinion, now is the time for you to get bitchy and hound your PCP for MRI and bloodwork. Dystonia , per your neurologist starts in the brain... the "wait and see " method for brain issues is far from acceptable. If you are a nice person who just doesn't get bitchy, then get an advocate, family member or friend to get bitch for you.
A thought: I have MCI, debilitating migraines etc, the MRIs I have had, depending on the technician and the radiologist that reads the imaging vary unbelievably greatly. I have learned that there is NO specific radiologist lingo, it's simply how "that" particular radiologist works...so huge discrepancies can exist for the same MRI. Good luck 👍 ShelleyW

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shelleyW | @shelleyw | Sep 3 2:28pm

kadelmaz,
Shelley again, I just read some of the link that John sent to you, great stuff. Seeing the drugs, when/if needed reminded me of a help for me...if the drugs are ones that I can't/won't take, has helped me quite a bit. Example: I have 3+ autoimmune disorders, the treatments are 99% steroids or similar drugs, I won't take steroids, my own reaction to them is utter madness ; so even though I may have another autoimmune disorder, I am not going for a formal diagnosis. This little idea, for me, has helped me to let go of the anxiety of needing a diagnosis. Just what works for me. ShelleyW

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