It has been such a very long time since I posted here. But I knew when my body started feeling more wonky than usual, this would be the place to get, if not answers, support.

For the last 3-4 years I have been suffering with what my previous neuro told me was muscle spasms. They seemed to only come on at night, while I was sleeping. A pain so severe in my shoulder and left arm that it would wake me up. It would last for approximately a 1/2 hour to an hour and then subside. I've been taking muscle relaxers before bed for the same amount of time, to try and prevent them. There have been times where I've gone weeks and sometimes months without this pain. But recently, within the last 6 months they've increased. When I saw my neuro for my regular 6 month visit, we talked about it as we usually do. He said he did not believe it was from my MS and thought maybe I had a pinched nerve or herniated disk in my neck. He decided to do a nerve conduction test and found that the nerves in my arm had been damaged. He still believed that this was the result of a pinched nerve or disk problem and sent me in for an MRI. The MRI showed no pinched nerve or disk problem, but a new lesion in my neck, which he concluded must be causing the pain. He had already increased the rx for my muscle relaxers and it seemed to be doing the trick so he said I didn't need to do steroids. Yay!

Oh, and an important part of this... when I get this pain in my arm it effects my vision. It's hard to explain, but if I wanted to read something I wouldn't be able to, it's as if my eyes are jumping. Everything I try to focus on bounces up and down. When the pain goes away, my vision returns to normal.

So for the last few weeks, the pain/spasms have increased dramatically. Waking me up several times a night and coming on during the day as well. They come close together, within an hour of each other at times. But the really strange thing is the vision. I'm getting the jumpy vision even more frequently and it doesn't always come with the pain/spasms in my arm.

I've asked my husband to look at my eyes while this is happening to see if they look like they are doing something strange, but he says they are steady and look normal.

Sorry this is so long, just wondering if anyone has experienced anything like this?

Hi Kim, long time no see. Welcome back. Sounds like you're having an exacerbation. Do you take any of the DMDs?

It's late and my mind is going to sleep..
Talk to you in the morning/noon.

I agree, its time to involve the neuro in this. they may even do a sleep study to be able to track the sx.

Hang in there.

I had a bad spasm last night. After I fell asleep on the couch, I took a shower and then went to bed. My right side from the neck down spasmed and scared the heck out of me so much that I started to scream. My boyfriend and my dog freaked out. It was not a pretty sight. It only lasted a few minutes but felt like forever. This morning I only awoke with ghost pain. I took 2 ibuprofen after the spasm. For some reason they lessen the pain and loosens up the tightness. That's only about the 3rd time I've had the spasms. I've tried to recall if I over did it or anything differently and can't recall unless the chinese food for dinner counts. I don't know if taking something to prevent the spasms would help due to their infrequency. I am on no DMD. if you are on something for spasms, how often did you get them?

Thanks,
Sheila

Hi Sally, yes it has been a long time. I hope you are doing well.

I am on Rebif, it is the only DMD I've been on since being diagnosed. My dr felt it is still working since I've only had 1 exacerbation in the last few years.

You are right, Dejibo. I probably need to contact my neuro.

Thanks for your replies...

But you have a new lesion...so that would indicate to me that your DMD isn't working as well as hoped...

I get bad leg spasms. I take muscle relaxers before bed and then during the night if the spasms are bad...

Hope you get some definitive answers soon...keep us up to date