Painful Myoclonus

[Sidesteps]

There seems to be a lot of misunderstanding about this issue with MS. It was the symptom I noticed first. This last week or so I've been having some pain. It started off intermittently about two weeks ago then progressed the last few days to nearly constant. The pain is hard to explain but it sort of feels like an ache that build up and releases. It's unrelenting, typically in my left leg and some times my right arm.  

The other day I had had enough and called my Neuro for treatment. Luckily enough for me?! An added symptom started the night before the RN called me back. I explained to her that my muscles (same leg and arm) are now beginning to twitch/jerk to the point my fingers and toes move. This is worse when I am resting.

The RN determined that it sounded like myoclonus and spasticity causes my issues. She did say that myoclonus can be painful but I am to start my Zanaflex until we start steroids on Monday. Welp, I have been taking my Zanaflex and it's not helping the pain or the twitching so it appears I am the lucky winner of painful myoclonus. Lovely! :(

Mostly, I am posting this because EVERY single general Neurologist I saw prior felt my muscle twitching/jerking was atypical for MS. That was the *thing* that seemed to throw them off yet I was specifically told yesterday, this was pretty common for MS. I will likely start tegretol Monday. FINALLY someone listens. Did I mention? I love my MSologist. ;)

[Sidesteps]

Thank you all for answering... I am a little out of it so hang in there with my thought processes.

[Sidesteps]

Your symptoms actually sound a bit more like spasticity to me. I had deep deep aching right after my worst flare. I really couldn't figure out what it was but it didn't feel good. It slowly got better...but it really felt like my bones were aching it was THAT deep.

This was on the surface. It felt like a mild area that was being stabbed but not as bad. It would gradually build like a upside down U then go away just as quick (usually less that 10 seconds) but it cycled repetively - at it's worst all day long.

Don't get me wrong. I have spasticity as well - these (for me, so far) are reflecting in muscle tenderness, tightness in various locations. My hot spots are my glutes, hip flexors and my right shoulder (that shoulder can get SO bad my entire right arm feels tight.)

Jens - It's myoclonus. My muscles are moving like hiccups but they are so strong they are making the toes and fingers move with the muscle movements. She was pretty clear that was myoclonus - the tic like movement is the key...and the twitch started occurring in the exact locations of the intitial pain.

I am in pretty moderate flare. I got worse on Monday to the point I actually thought I had the flu; so I think I made the right decision on treating. (I was doubting myself.) My voice is once again hoarse, muscle fatigue to the point I was having hot flashes walking 5 feet and my spasticity hit my neck again...and I slept almost the entire day. The pain though was new and proceeded these symptoms. I am thanking my lucky starts it did not hit my vision.... I started my IVSM Monday and feel a bit better with symptoms. I have one more day. So far, I seem to be lucky - my body like the strong drugs as I have minimal side affects. It's CRAZY. LOL ~

[jensequitur]

Surprisingly (or maybe not!) myoclonus and spasticity come from the same source - damaged nerves.  To me it sounds like you're getting spasticity - if it feels like it's constantly tightening up, then it's got to be some sort of spasticity or spasm.  

Spasms can cause your body to contort in all sorts of weird ways.  I've woken up in the middle of the night several times, because of spasms.

One hellish night, my right toe went up (shin splint muscle,) and the muscle on the outside of my right calf started spasming too, so my little toes went up.  I had to grab my foot and force it to point, and at the same time turn the foot toward the inside.  All this was excruciatingly painful - I was cursing and sweating from the pain.  And my foot just would not relax!  Fortunately in all the commotion, my honey woke up and asked what was wrong, so he was able to help me get my toe pointed.

All that is to say that you can definitely get movement from a spasm.

[saucygrl]

My left side has been twitching like crazy when I'm relaxing.  During the night it will even wake me up.  Thank goodness there isn't a huge amount of pain, just makes getting a good night sleep difficult!

Hope you feel better soon.
Chris

[mayperl]

Hi.  Finally, it sounds like someone that has a similar symptom to mine... sort of.  I've asked around and no one could relate.  The MANY MS Dr.'s I had seen said it didn't sound like an MS symptom (and they were the best in the state, members of nmss, speakers at neurological events, etc...) it was starting to frustrate me because no one would really try to figure it out.

My last Dr. figured it out, but it took many, many complaints for her to listen and try to figure it out.  It seemed to worsen when they IV'd me with steroids.  My hips and top thighs had a deep pain / ache.  Almost felt as if it were in the bone.  It would build and get stronger.  It wouldn't matter if I were laying down or sitting.  Just being awake made it painful.

So, my dr. prescribed metaxalone.  It reduced the pain dramatically.  It didn't take it away, but it made it bearable to go to work and put on a happy face.

Considering I am now intolerable to steroids, that is my only saving grace.

[ku111]

I don't know if this is the same sort of thing but you answered some things for me.  You know when you are sitting at a table and the whole table shakes from someone's nervous leg?  Jordan's right leg does this but doesn't stop when you put your hand on it.  I asked him when this started and he said a while now and it just does it and he can't stop it.  No pain just uncontrollable shaking.  He says it is irritating.  I was going to ask MS Neuro this friday about it.  I will let you know if she has any other explanations or remedies.  I do hope this gets better for you soon.

[supermum_ms]

Hey i found this site which is really brilliant at explaining all movement issues, its called 'movement disorder vertual university' i think its been created by 'we move', which is another great site to visit.

http://www.mdvu.org/library/disease/myoclonus/

its pages and pages of all the different classifications, associated dx's, causes, medication etc its well worth reading.

Cheers.......JJ

[Wobbly]

I find you get different answers to different Neuro or specialist... it really makes you wonder if anyone knows all the correct answers and I feel that MS is different for each individual and I can have Pain, Jerks, Spasms, at different times.  And I find when I overdue it at all, I'm tired out for days.  

also have to mention my famous Vertigo spells... that was my first symptom that I can remember, I'm sure I had some others like tired, but thought I just worked too hard....

take care and yes, it's good to find someone that doesn't make you feel like your loosing it.
wobbly

[maxthecat43]

I am sorry to hear about this painful issue.  This is a pretty good team here.  I had similar experiences with other neurologists.  It's confusing that they don't all seem to have the same knowledge.  

[Sidesteps]

Note: I thought she said tegretol but that is for TN. My TN isn't flared right now so I must've misheard her.