Dystonia Support Group

Dystonia (literally, "abnormal muscle tone") is a generic term used to describe a neurological movement disorder involving involuntary, sustained muscle contractions. Dystonia may affect muscles throughout the body, in certain parts of the body, or may be confined to particular muscles or muscle groups.

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AusSue 06/25/2011

Hi,
I have not been "officially" dx with dystonia but when I was in hospital for a ms flare up & optic neuritis some of the neurologists there said that my eye issues - constant blinking & closing - eye only half opens, could be dystonia.
They didn't order any tests at all but have ordered botox injection for the eye.
I have still got not good sight left & it varies how much pain I have in it too. Thought this was another part of the ms.

Anyway the Botox is booked for 1st August & I know very little about it. I don't know where in the eye they inject, how long I can hope it will last for, what benefits I will get from it too. Hopefully the eye flickering will cease/ease, the eye will open up more & if my sight improves that would be even better.

Would like any feed back on when you have had Botox done & what benefits you have had from it & how long it lasts.
Have also asked on other boards so sorry if repeating.
Thanks,
aussue

deleted_user 07/23/2011

I have focal dystonia or hemi-facial spasms i have had good luck with botox for the eye until my last injection in April and I was given too much botox but other than that it has always worked and keeps my eye open,,,,, good luck think positive

AusSue 07/24/2011

Thanks for sharing your experience, I am sure hoping it works as really frustrated with eye at the moment. Am thininking positive.

AusSue 07/24/2011

I meant to ask how long each injection lasted & is it painful at the time too? Have been told could have to wear a patch over the eye for anything from hours to days, have you had it near eye?
Thanks for your response.

AusSue 08/13/2011

Well that was a waste, worked for about 1 week. Right eye now closed & left threatening to as well from time to time.
Stop the world I want to get off

Neener 08/25/2011

Some doctors are better at administering botox than others and it can take a while to get the right dose and the right muscles. It doesn't seem to be an exact science unfortunately. Sorry for your bad experience. It may still kick in. When I get botox it often takes 2 to 3 weeks to really start helping. Is your eye doing any better at this point? Maybe it's still an ms thing. Have you already had steroids? So sorry you're going through this. Hope it does get better soon. Take care.

AusSue 08/26/2011

Thanks for asking Neener.
I went back t the neuro-opthomologists a couple of weeks ago & they said probably too much botox as eye was still not open & basically no proper vision. The pain had gone & it wasn't blinking constantly so the Dr's were happy - they are not the one's trying to function & manouver an electric wheelchair/scooter.
SInce then it opens some of the time but very limited misty vision. Often constantly watering (so much for side effect of dry eyes)LOL
I have been keeping a journal of it for the botox Dr's on4th December.
Next challenge is the last few days I have been getting some pain in left eye (good one) & today it started flickering & a little blurred - comes & goes. SCARED CRAPLESS to put it mildly as struggling to manage with lack of coordination & judgement etc. Loss of sight would be what will take me out of the work force. Just hoping it will improve & go away not like other eye.
Does this sound like part of dystonia or is it the ms again?
Had steroids when other eye went in May. dont want them again so soon.

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