Dystonia?

General
1

i've had SCA2 for 18 years. i shake uncontrolably during fall, winter & spring, is this dystonia?

2

Hi,

Dystonia is pain, not solely shaking symptoms. I shake too when it is cold. I have what is called essential tremor and that might be what you have... Please see a doctor. If you have pain then it could possibly be dystonia since it also involves shaking.

I hope that helps. :)

3

I have CA a recessive genetic form unknown to date. I’m currently in the Humane Genome Sequencing research program with Dr Fogel of Baylor University threw my neurologist at UCLA,Dr. Susan Perlman. I suffer with Dystonia and myoclonus also. It sounds more like myoclonus to me rather than the painful twisting of Dystonia although also having essential tremor this leaves me with a heavy shacking tremor when I get cold, hot or over worked of upset. Either way, let your doctor know. I hope you feel better and that this helps. I take many meds but for this the Gabapentin and Sinemet help.

4

Izaine,

thanks for yr response. i may hv et, though; since my tremors are regular. does yr torso tremble?

i got this from webmd:

"

Dystonic tremor and essential tremor

It is important to distinguish dystonic tremor from the most common type of tremor, essential tremor. Essential tremor is a tremor that usually affects arms, hands or fingers. It may also affect additional parts of the body such as the head.
The key differences between essential tremor and dystonic tremor are as follows:

  • Essential tremor does not appear in combination with dystonia.
  • Essential tremor has a regular oscillation while the movement in dystonic tremor is usually irregular.
  • In most cases of essential tremor the arms, hands or fingers are affected symmetrically. In contrast, dystonic tremor can affect other parts of the body, such as the head, without the hands or arms being affected (although dystonic tremor can also sometimes affect the hands).
  • Dystonic tremor can sometimes be temporarily relieved by a sensory trick but this is not the case with essential tremor.

"

pain isn't always invovled,

5

I have sca 2 as well. I was just diagnosed having Blepharospasm dystonia and I was told that 9% of people with sca2 also have dystonia. So if it is welcome to the lucky 9% :slight_smile:

6

Well from the sounds of it I have a dystonic tremor because it is in one arm and hand far worse than the other and when I have Myoclonic dystonic episodes which mimic a seizure yet you are consciousness my entire body will shack violently for hours if not medicated down.

Renee, please tell me about Blepharospasm Dystonia?

7

Lots of tremor but no twistinng or pain.Father twisted a lot but was told his wass Parkinson's.Mine is CA.Tremor is mainly in both hands affecting eating and keyboard skills.At nightime whole body shakes making toiletting annd cleaniong teeeth impossible.Can do the teeth and toilet thing in the day but need a lot of help.Tremor came on violently after 5 years of having CA.Dystonia and Ataxia do seem to be connected. Check thyroid levels.

8

Thyroid? Interesting Marie, tell me more.

9

..don't cha wish those wonderful scientists,find a cure .. like real soon.. cause I'm startin' to get real pizzed off..Ozzy

10

Lavender

One of our people with Ataxia also had thyroid isssues.Ask your GP to check your thyroid levels-just a shot in the dark.

Have had the genome test and many others but still I have an undiagnosed CA.

11

Tremor is constant.I thinkk our circculation system is compromised hence the response to the cold.My feet alternaate between cold and hot -rrarley just righht. Spasticity is tthe same whatever the wweather.