Jaw spasm & neck muscle problems?

[AnnW22]

Hi, I am new to this forum which I am now following on behalf of my husband. He has scleroderma primarily upper body, as a result of Chronic Graft vs Host Disease post stem cell transplant. He has had and still has many issues with c GvHD.

This year he has developed 2 more problems which are proving difficult to diagnose. I was wondering if anyone had experienced similar issues with scleroderma?

1. involuntary jaw spasm on eating (relaxes after about 30 seconds) and now when speaking. We practice ventriloquism!

2. Unable to hold his head up when walking so muscle inactive. Nerve conduction studies inconclusive.

Any information would be much appreciated, many thanks.

[Sophiebun11]

I'm not sure if this is the same thing. I kind of attribute it to my Prednisone. but if I move in a certain way, chew or even yawn my muscle up under my jaw and down the sides of my neck go into a spasm that lasts up to 5 minutes. It's scary as I can't swallow or open my mouth and if I'm in the middle of eating I've almost choked.

I get spasms in my inner thighs and also my obliques. I presume it's Sclero my Dr. never pinpointed a reason.

I'm sorry to hear your husband is having so much trouble.

Best of luck to you both.

Ventriloquism, cute. It's good to have a sense of humor : )

🐇🐈😀

[AnnW22 in reply to Sophiebun11]

Hi Sophiebun, many thanks for your reply. It does sound as if your jaw spasm is similar! So far it only lasts about 30seconds or so but seems an age to me in case he chokes, as you say. He does find it can help if he massages the TMJ joint and muscle(joint at top of the jaw just in front of the ear)Perhaps this may help you if you have not tried it?He has been on various doses of Prednisolone up and down for the last 4 years. eg 60mgs down to 3mgs and back up again!

The neurologist seen this week has not seen this before or heard of this presentation.

Apparently botox can result in some muscle weakening so not sounding good for this at present

A further referral to look at his neck extensor muscles.

🙃😀

[Sophiebun11 in reply to AnnW22]

Please let me know if anyone figures it out for your hubby. I haven't really pressed the issue as it comes and goes and I always have so many issues to bring up during my 15 min. Dr. appt LOL

I tend to forget in between. Yawning really seems to set it off. Of course the mouth area tends to tighten a lot with Sclero so it is most likely from that. I've been having it since I was diagnosed about 40 years ago.

Best wishes with everything. I'm sure being a helpless "standerbyer" is scary too!!!

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