Last reply 6 days ago
Spasms/dystonia choking me.

Spasms/distonia whatever it’s called… Driving me up the wall and nurses don’t want to take responsibility because “I don’t know your case”… Noone does… I was diagnosed in December. I’ve seen two nurse in that time on three times between them…
Managed to get diazepam from doctor but it’s not exactly doing much of anything for them… :/ Affecting my tongue, lower right of face. Neck breathing arm. Aka entire right side of body. And often full body also… 5days of hell with them… No rest… (Had these maybe one big one a few times a year… previously. Then 7weeks ago they started almost daily… And now since Sunday soo many big ones throughout the day)Being told “it’s just an exacerbation” makes me want to hurt someone… These things are causing me to choke… That’s not “just” anything!

I started Gilenya last Monday. The spasm attacks got worse in general after having second dose of the varicella vaccine 7weeks ago. Sunday something happened. The world felt like it dropped a 50ton block on me… Obs were high but our first responder made the call that unless I stopped breathing entirely it wasn’t worth a trip to a+e. Haven’t had a rest since Sunday. The diazepam they gave me last night is helping a little but I’m still spasming through…
Only reason I even managed to get the diazepam was ebcajse I mentioned to the nurse o got ahold of that my gp suggested either steriods of diazepam… Only reason they even bothered to help…
Had more helpmyoj ourrnforst responder even though he’s not even here any more..reminding me to stick myself into the recovery position during the choking attacks…

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vivien
1 week ago

@elliesmith sorry to hear about your problems. I’ve not experienced this but have a very close friend who has dystonia which isn’t MS related. He’s had botox injections to help with the spasms and had an implant 4 years ago which makes a huge difference to him and he’s able to function almost normally again after 10 years of looking over his right shoulder and unable to use both arms. Speak to your neurologist if it continues and see what they suggest.

Most of all, keep up the fight! 🤗💟


stumbler
6 days ago

@elliesmith , wow, you’re going through it, and not getting much help along the way.

Here’s an article on spasms, which suggests that Baclofen or Gabapentin are the primary treatments :-

https://www.mstrust.org.uk/a-z/spasticity-and-spasms

Baclofen can be a double-edged sword. You need enough to relax the muscles, but not too much to over-weaken those muscles.

Swallowing issues, or Dysphagia, can be alarming. Here’s another article, which describes the problem and how best to remedy it.

https://www.mstrust.org.uk/a-z/swallowing

You’ve had a lot going on recently what with chickenpox vaccines and starting Gilenya. So, you do seem to need time off to just sit down and breath. Hopefully, the Gilenya is being well tolerated, so I would hope that you can look forward to a period of stability.

We do have to take an active role in all our treatment, so you may want to discuss the above articles with your Doctor, so that your present treatment can be reviewed.


elliesmith
6 days ago

Hey stumbler thanks for the info. Sadly this is with me already on baclofen and even having tried to up the dose to try ndnhelp, it didn’t and I still had a huge attack while on the higher dosage, but I was also floppy…
I can’t have gabapentin and the lyrica that I was on did naff all and I finally came off the last dose a few weeks ago (with no change to the spasms).

I’ve had swallowing issues a long time. The spasms are what’s causing the problem. I can’t stop them sadly… Only reason I was even offered anything was because I told the nure i spoke to that my gp had recommended either steriods of diazepam. And well because eovenjidt started Gilenya steriods aren’t an option (although my gp did mention I’ve a month ago that steriods should have been given…)

I can handle the ones that aren’t in my face and throat… I mean I’m exhausted and I’ve about knocked myself out on things because of them, but in general they just suck. But the throat and face…stopping me breathing and causing choking isn’t pretty and well is pretty terrifying. My tongue was doing a jig last night multiple times… I’m just lucky Incan just about breathe through my nose enough…


stumbler
6 days ago

@elliesmith , Doctors aren’t normally that clued up on MS, so I doubt if they would have prescribed Steroids at an effective dose.

As the present medications aren’t helping, you should give Tizanidine a go. It might help where the others have failed.

I’d also push for a referral to a Speech and language therapist, to see if they can help with the dysphagia (swallowing).


merfield
6 days ago

@elliesmith god what a truly rotten time you’re having…..I have swallowing issues too and occasionally spasms but nothing like you’re going through. Is there a possibility you could see your neurologist to discuss the best options -‘it could be that you’re a case for the newly approved canabis oil ( think it’s oil). It’s supposed to relieve spasms I think…..good luck and don’t let the MS bugger beat you down. Xx


stumbler
6 days ago

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