Forum

Puzzled, need some advice

Hi all, Apologies for long post, I can’t get my return key to work on the site. I am seeing my ms nurse tomorrow as I have been having what I have described to her as spasms of my right arm for the past 9 weeks. She has emailed me and said my neuro has put down a list of meds that I could try which she will go through tomorrow. I guess this must be a relapse of sorts. What I am puzzled about is that when I read peoples experiences on here of muscle spasms, my arm doesn’t sound like that so I don’t know whether I am having spasms or not. Basically the feelings I am experiencing are a massive pressure right down from the front of my right shoulder down to my hand, it feels like someone is crushing me and trying to pull me over. This causes the most terrible pins and needles in my hand and espeicially my thumb and forefinger. They are really the most painful pins and needles I’ve ever had. My arm and shoulder are so painful and uncomfortable but it is a weird type of pain, not the sort of acute pain people get. This has been going on every few minutes every day for 9 weeks, it wakes me up at night. I tried amitriptyline ( prescibed by gp ) which worked for the same problem last year but it has not worked. I’ve also tried gabapentin which worked when I had the ms hug last year but that hasn’t worked for the arm either. I found some Naproxen and tried those as I am fairly desperate but they worked for about 10 minutes then I was back to square one. Unfortunately during the last couple of days I am now having problems with my left side with a kind of sciatica type pain from my shoulder, my arm, through my bottom and down my leg, completely different to what I’m getting with my right side. I dare not mention this to my ms nurse as she may say it’s nothing to do with ms and it’s not a relapse ( as the left side problems haven’t started 30 days after the ongoing problems with my right side ) and then I won’t get any meds. I am so confused, all I know is I just want to feel better.

If the new symptoms are within 30 days they’d count as part of the same relapse wouldn’t they? Not be written off as not MS. If it isn’t MS a doctor (GP first who would quite probably refer it to a neuro) should find out what it is. If another cause isn’t detectable then MS would explain it; but, of course, that’s for the expert doctors to weigh up.

It is causing you problems, so I would guess you need to talk to your MS nurse or GP.

Gabapentin didn’t work for me recently even though I’d used it previously for a past relapse - they switched me over to pregablin and it did the trick. Only used it for a few weeks but it helped immensely. Worth mentioning it to the ms nurse or gp and getting a prescription for it to try. Let us know how you get on with things x

Hi, thanks fr replies. Saw ms nurse on Friday. wAS feeling so bad, no relief at all from arm and shoulder spasms. I’d had enough and broke down in waiting room. Good job oly my husband there. Ms nurse very good, got neuro to see me even though no appt with him. said i was getting tonic spasm. Put me on tegrtol retard. Husband said he never seen me so cut up with pain. excuse my writing but i’m on these pills and i can’t walk or talk or think proply. Told ms nurse, she was very kind, even rung me evening to see how i was. She trying to get me appt. neuro next week as i can’t manage on pills and pain only gets edge off it then comes back. not sure wht to do but will need differnt pills. Gp and ms nurse told me off as i left things so long. In a mess now as mt dad now collapsed and rushed to hopsital they think it’s pancreas or gallblader. sister with him but Got to try to help my mum but can’t think proply at mo. sorry

Be kind to yourself and even though everything is all over the place and things are stressful remember to share the load and let your sister do the hospital side of things and try and relax a bit - not great being in pain and trying to fight through it especially with everything going on. Thinking of you. Big hugs x

Be kind to yourself and even though everything is all over the place and things are stressful remember to share the load and let your sister do the hospital side of things and try and relax a bit - not great being in pain and trying to fight through it especially with everything going on. Thinking of you. Big hugs x