Hi everyone, I am new to this site. I have tremors and dystonia in my neck, but now no definite diagnosis. I was thinking I could have SCA14 after reading about it.
Does anyone know where they test for this?
I have lots of symptoms, including slight weak swallow, weak ankles, eye movements, fatigue, dizziness and off balance, numbness and tingling, to name a few.
Has anyone used Baclofen for tremors as I was not sure about taking this?
Any info appreciated, thank you
Dear Suzy,
You should see a neurologist or your doctor who should recommend the correct medical speciality and then they will do all the tests. Meanwhile do not suffer in advance until you get a confirmation of the diagnosis. I am not sure what part of the world you are, but start with your family doctor. Meanwhile stay positive and cheerful it is always helpful.
I hope it all goes well amd look forward to hearing from you on this site.
Best wishes
Isabel
Hi Isabel, thank you for your reply. I have seen neurologists but they are now saying they are not sure what is wrong with me. I was negative for DYT11 gene. I then read an article that said if this was negative then SCA14 should be considered. So I am hoping I can get tested for this.
All the best
Suzie
Dear Suzie,
I understand how frustrating this is until you get a final diagnosis. Here in Portugal they seem to know alot about it so I was diagnosed quickly. Maybe ataxia UK can advise you where to go, are you in the UK?
Keep cheerful
Best wishes
Isabel
Thank you, I am seeing my doctor tomorrow, so I will ask her to help me with this
Hi
My neurologist diagnosed torticollis (cervical dystonia). I have BOTOX injections for this every 3 months. I understand acupuncture might be beneficial too so I'm going to try this. TMJ is interesting Too. Found on you tube & someone on this site also mentioned. Look on you tube.
I take gabapentin prescribed by neurologist. It's not suitable for everyone.
A neurologist that specialises in ataxia should be able to diagnose. Ataxia UK can advise.
Do bear in mind though that some ataxias aren't identified as they may not have been tested for, as in my case, although they may be able to tell if it's genetic.
Good luck 🤗
Sorry they cannot find what is wrong.
Baclofen works for some but did not agree with me. I have cramps and turmeric helps me. We are so individual but you need to find what works for you.
When taking anything be careful. This is a useful website to check stuff x
Thank you Litty, I know my body is so sensitive to tablets. Diazepam helps but a take very little as it is addictive. I will check out the web site thanks, wishing you well and everyone else.
Suzie .......I have had hand tremors ever since I was a small boy, my parents never got it looked at by doctors. I have lived my whole life with it, even passing an entrance medical for the Royal Air Force, I still have the tremors and am now 73 years of age.
Don.
xxx
Bloody word checker on my iPad, sorry I did address it to Suzie. xx
That was good you got in the Royal Air Force with your tremors. They are annoying to me and tiresome at times. Good to be able to do things we can do though.
Dystonia
Dystonia
My Episodic Ataxia 
DVLA and Licence
