Dystonia

[butlin]

Hi have msa and Dystonia is one of my problems in hands mostly I wonder if anyone has had Botox Injections and are any nasty side-effects as I am finding medication sometimes Just gives me another problem Take care regards Chris

[Crodiet]

HiMy sister had Botox injections in her hands for quite a while and they worked for quite a while, she was with Queen’s square and got referred from one consultant to another and they were great, with her they more or less said she could have it for as long as it helped as she needed. She didn’t have any significant side affects. The only negative was she had coat hanger pain and a lot of pulling left on her neck but they weren’t prepared to use Botox there as it was too dangerous. My advice is get hold of a specialist who has experience with movement disorders and listen to them. There are a lot of people (probably me included) who give advice without enough knowledge so please be careful.

Pippa

[butlin in reply to Crodiet]

Hi pippaThank you for replying,I have tried to Google it but not a lot of information.But am going to see a movement consultant in a couple of weeks time.You hear of so many different stories so am trying to get as much information as possible.thanks again

Kind regards

Chris

[Boyyo]

Hello Chris,

My better half, J, had Botox injections to saliva glands two weeks ago, so good your questions well timed 😀

J's saliva management has been one of the more frustrating MSA symptoms, and has progressively worsened to the point that she has a tissue to her mouth for significant periods of the day.

We tried Atropine (1%) for 5 months, then switched to Glycopyrronium about 2 months ago. The plan was to try these and also Hyoscine patches before moving to Botox injections as they seemed the more invasive treatment.

The Atropine seemed to work for a few weeks and then stopped working, which was similar to the Glycopyrronium solution....now we need to remember the old adage....everyone is different!!

I'd spoken to people who had great success with both of these treatments, just not J..!

In parallel with these treatments, J's MSA consultant had referred her to a Maxillofaccial (Botox) consultant at our local hospital in Poole, just to start the ball rolling on all the possibilities to help this horrible symptom of MSA.

J has had reservations about Hyoscine, because unlike Atropine and Glyco' it crosses the blood brain barrier, which concerned J for some reason... As it happens a date for the Botox consultant came up and we went in two weeks ago.

He explained what would happen and how it worked, surprisingly J agreed to do it which was a surprise as she's normally very hesitant about new things, however it just proves how nasty the saliva management can be. He suggested only injecting a small amount at this appointment into 6 zones and he'd repeat in 8 weeks time. The results...hopefully improvements, are expected to show up in 5-7 days.

So, again, it's important to remind that everyone is different and that this treatment works on many, many people ....I do my homework and had spent many hours talking and researching the outcomes etc...

It didn't work, in fact the side affects seem to have impacted J's ability to drink!...she's now needing to be very careful to drink enough to stay hydrated, meaning sipping 5ml of water constantly. Her eating hasn't changed, she eats well as along as it's cut small, which has always been the case since MSA entered the scene.

Nobody can be 100% it's the botox that caused this shift, it could be just coincidence, however it seems likely...we'll know in 6-8 weeks when as the botox wears off. Best case scenario for J is that it's 'just' an unfortunate side affect of botox and she'll go on and try Glyco' patches. Worst case is that it's a real MSA symptom and drinking will become a problem resulting in discussions around PEG's etc...

It may not be what you wanted to hear, and I'm not sure if there's any way of testing the potential of this on others, I'd not come across this in my searches which is why I'm sending this now.

Please feel free to contact me directly if you'd like more info.

Cheers

[butlin in reply to Boyyo]

Thank you for your reply hopefully it will work for your partner I will still try and get some more information kind regards Chris