Does any others here have a startle response that is getting bad. In my case when I get startled I jump or react violently, not to other people but When I get startled I am afraid I am going to jump thru a window or against a wall or into a car I even get startled by someone walking towards me sometimes. I do make violent movements sometimes like banging into the shower doors or things near me.
that might be sub conscious. it doesnt happen to me that way. i usally dont have a warning when im going to fall.
All the time! It's a central nervous thang that happens with Cerebellar Ataxia..If anyone touches me from behind without me
knowing they're,there! I short circuit and go nuts @ them..
So be careful! Not much you can do about it.
might want to talk to your doctor. They may be able to help.
Kay my neurologist cant do anything unless you have parkinsons it seems. My last 3 E-mails did not get me into his office. I wanted to try leva-dopa or whatever to see if any help there, no help, had and eye problems he said it could not be from my disorder, and trying to get a trial on the vest and no help, he fights me all the way it seems.
I recogbise this immediately. Its sounds very much like Stiff Prerson Syndrome, which i have in with progressive myoclonic ataxia. You need to discuss this with your neurologist, who may have heard of it. Its rare but there are some excelelnt neurologists out there who will know about it smd be sble to disgnose it. Google it. The e medscape site was approved by my neurologist to share woth other professionals to tune them in about it.
Bet you get stiffness in the back,in the legs and trunk, neck or abdomen and amybe in the face?
Its realted to having cerebellar ataxia and is very complex to explain and get diagnosed. Send me a message if you think this could be you
Hell yes and it feels awful. My kids take great pleasure in making me jump and sometimes it’s only a small thing that sets it off. Sometimes it can be painful too. One time , my son jumped out at me and it was so bad I burst into tears. He hasn’t done it since and I haven’t driven for 3 years because of the fear of it happening in the car.
I also have odd times when I just bang into things and sometimes when I’m nodding off I jump and that’s horrible too.
The jerking you get on nodding off is in fact a myoclonic jerk and perfectly normal, but myoclonic jerks when you are awake can feel a bit like these.
Yes to being so startled it makes you cry.
The ‘fear factor’ you describe over driving is classic SPS.
I too dont drive now but mainly because of the zonking medication to damp things down.
Do private message me and i can tell you more.
Got peripheral neuropathy?
Have you had a look at the e medscape site at all? Theres is a Stiff Person group website here in the UK, and several world wide ones. Ill do a bit of looking about to see if there is a connection with SCA6 which i think you said you have and SPS.
Hope this helps. I’ll do all i can.
Yes to peripheral neuropathy but g.p says its Carpel tunnel syndrome. Why the SPS and driving. Just very tired and fed up.
I also think lot's of people that do not have ataxia have this too. I've always had it noticed that I'm not alone.
omg... I thought it was just me. ppl laugh @ me I'm so easy 2 scare or surprise