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  • HeaHea79

    Hi, I guess a little background first...was diagnosed with MS over Christmas (I did not even ask Santa for it) but like many others think I explained away symptoms for many many years prior. I had numbness from the waist down for about a month and thought it was a pinched nerve and then my right arm just stopped doing what I told it to ... and that led to my hospital Christmas vacay and a battery of tests to rule out stroke etc.  I had an active flare on the MRI and 5 days of solumedrol and since then my arm is a lot better but my legs are still super duper tight and it feels like someone wrings their hands around my knees. I haven't started DMT yet cause my insurance keeps denying it.

    Anywho, my question now is that yesterday and today I have gotten a weird flash sensation through my body and then my entire right side is drawing hand curls in and my arm and leg seize up and my foot...even my face and neck muscles seize up. I've mentally done pretty well emotionally up until this but it has completely freaked me out. It doesn't last long but long enough to be frightening and painful. I don't know what is causing this? Is this normal... has anyone else had this happen?

  • maria1
    While it may be muscle spasms, a common plague of ms it may also be other things, you probably want to message your doc about this, depending where the leisions are would also have an effect.
  • HeaHea79
    Hi Maria, Thank you so much for your response. I went ahead and reached out to my doctor and she said it sound like paroxysmal tonic spasms and that they aren't harmful and aren't seizures, but that I could start seizure meds to help. I went back to work for the first time in 2 months and I had one there but luckily I was already in the bathroom. Knowing they aren't harmful is helpful but they are still freaky and painful! Thank you again for your support! 
  • maria1
    Now you get to tell your brain to fix it and wait till the brain solves the problem. Besides that, do muscle relaxing exercises all day long so you know for sure you are not tensing unconsciously making it worse, hemp oil creams and cbd oil creams both help temporarily as does over the counter pain patches and cbd oil and hemp oil capsules taken internally instead of other drugs. Also, a reminder for and drugs learn the side effects before taking anything so you know it is not you but the drug reacting, it saves much aggrivation.
  • golgotha
    was diagnosed with MS over Christmas (I did not even ask Santa for it)

    You must've been some kind of naughty last year. :-)  You must've had fun! (FWIW, check out this video.)

    I don't know what is causing this?

    Remember, MS can cause weirdness in sensations and muscle spasms anywhere in your body. And just for bonus challenge points (!) you have to wonder if it's MS or some non-MS issue. Lucky us, huh?

    The rule of thumb is (ask your doctor; rules of thumb are dumb!) is that if it lasts a few days or a week, then call your doctor.

    Is this normal...

    You, me or anyone else with MS are most certainly not normal. :-) And to make us "extra special," we are each little snowflakes, with some similar characteristics/symptoms and some unique ones.
  • HeaHea79
    I would never ask if I'm normal. I've known that answer for a long time. Lol I went to the gyno on Valentine's Day. I had set the bar so high for Christmas...I had to think think think what could be as enjoyable as the hospital for Christmas? Lightbulb! Gyno for V-day. So they called today and said I had a bacterial infection which makes me wonder if the infection could have anything to do with the new spasms. I'm becoming quite the regular at CVS...picking up a new Rx like it's my full-time job. I don't know enough to know if the infection could short circuit my entire system, but it is definitely like someone spilled water on my motherboard. Ps. I enjoyed the video. Thanks for the link. 
  • golgotha
    I don't know enough to know if the infection could short circuit my entire system,

    Oh yes, any infection, a cold or flu (etc.) can set off a "flare" or just cause symptoms to get a bit worse. So don't do that. :-)

    You may have been as tough as an alley cat before MS, but now you're a fragile kitten and have hard limits.

    Of course, the "fun" part is you still have to keep that tough alley cat mindset. Pushing the envelope, as they say, is important.

    I haven't started DMT yet cause my insurance keeps denying it.

    As you're no doubt aware, this is 1 of the 4 keys in being 4 for 4 in fighting against this #&@)%! disease.
  • HeaHea79
    I feel like an alley cat that needs to be handled with kitten gloves. Enjoyed the videos.