Dystonia

[Avamia94]

Not sure if this this the right group for me. I have a dystonia that affects the area around my mouth. The last 3 years its been under control with baclofen which was a miracle with little problems but since May last year its been gone continuously. I'm still waiting to find out why sometime i can be "normal" others unable to talk, eat, drink or even breath when doing exercise as little as walking up the stairs due to already struggle to breath out my nose. The pain is unbearable at times.

Does this happened to anything else? Or am I just unusual?

[stayingcontent]

Hi! Rest assured you're not alone. I experience Dystonia with FND too. At times, I can't speak, my voice goes, I stuttered, my speech becomes slurred, or I simply can't open my mouth. I work with a speech therapist to help with the above symptoms. Perhaps, you may have to go that route. Please stay encouraged, one day at a time, and be kind to yourself. Wishing you well because you are not alone!

[Avamia94 in reply to stayingcontent]

I'm sorry to hear that your speech and voice goes mine is more my lips and cheeks sometimes my tongue but due to it being so hard to open my mouth i cannot speak or I look like I'm having a stroke when I'm able to communicate. Could I ask do you know why you have a dystonia or did it just happen?

[stayingcontent in reply to Avamia94]

It just happened.

[Avamia94 in reply to stayingcontent]

That's so sad and annoying we will never get a reason why and how we have Prevent it

[Grow123 in reply to Avamia94]

I was originally diagnosed with dystonia but then got the diagnosis of FND which fits my symptoms way better. My understanding is if the movements are random, it’s pure dystonia. But, if the symptoms are brought on on something or can be distracted by something it’s FND. It took seeing a super specialist neurologist who specializes in movement disorders at a university hospital to get on the path to healing. Now I have a whole team of experts helping me and we anticipate a full recovery.

[Browninger]

For sure you are not alone I have been dealing with all of the speech issues; stutter stammer, only whisper, not talk at all, if I lift something heavy my voice goes hoarse! I also "babble" It sounds like a foreign language but it is just brain junk. My dystonia is random but usually affects my arms in contorted positions. The latest symptom to develop is rapid muscle fatigue and shortness of breath. The slightest amount of exertion causes unrealistic deep breathing. As usual, all normal test results. It has been 12 years for me

[Avamia94 in reply to Browninger]

Wow that sounds crazy everyone experience dystonia so different and 12 years that a long time does your come back at times or do you have it all the time?

[Browninger in reply to Avamia94]

It happens very seldom but usually when I am doing something like cooking or typing. I will reach for something and my fist will land on my forehead and stay there till I breathe through it to relax, crazy, right?

[Avamia94 in reply to Browninger]

It's so annoying we will never get a reason why?