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    #1

    I'm on fire!

    As if everything else wasn't bad enough with this stupid flare up of whatever this is with the "hug", muscle pain, "seizures", fatigue, etc., now the burning is back too! I took a nap, during which time I had at least five "mini-seizures" and woke up both depressed and with my left foot, leg, arm, and hand and my right cheek on fire!

    I've already had to start taking baclofen again (I'd totally got off of it for about four months), but now I'm going to have to go back on the gabapentin too for this stupid burning! (Thank goodness I still have some left.)

    Whatever this stupid disease is, I HATE it!!

    (Sorry for the rant. I'm just sick of this, especially since I don't even know what THIS is!)
    Joy is not the absence of suffering. It is the presence of God.
    Cut aspartame from my diet in 2012 and my symptoms have slowly disappeared. Interesting!
    Alpha Lipoic Acid (200 mg) + Acetyl L-carnitine (1,000 mg) = No more fatigue for me!
    Tags: None
    #2
    Oh you said everything I wanted to tonight!
    I hate whatever this is too!
    maybe the medicine will at least let you get some sleep tonight. praying tomorrow is a better day for you.
    take care, Linda

    Comment

      #3
      Shashi,

      You sure are going through a lot right now! I'm sorry, and I hope you feel better soon.

      Seizures?!! How terrible for you! You said you were napping, do they wake you up each time?

      Bless your heart, I truly hope you get some relief soon.

      Best,
      Mandy
      , T2B

      "I have a lot of pain in my microwave".

      Comment

        #4
        Mandy, I was having the "seizures" (if that's what they are) as I was drifting off to sleep. I'll be just about asleep, and suddenly my body will stiffen up and I start having bad tremors, which are way worse on my right side. That'll go on for 15-30 seconds. I'm aware that they're happening, but I can't stop them.

        On top of the burning now, my face has been going numb for the past half hour! Gee, this is just so much fun - NOT!
        Joy is not the absence of suffering. It is the presence of God.
        Cut aspartame from my diet in 2012 and my symptoms have slowly disappeared. Interesting!
        Alpha Lipoic Acid (200 mg) + Acetyl L-carnitine (1,000 mg) = No more fatigue for me!

        Comment

          #5
          Sashi,

          I have something similar to the "seizures". I don't know that it is happening, but usually when I am on my last leg and konk out, I have been told that my entire body starts to "tremor/shake" by my boyfriend. It has only happened a few times but it seems that you are not alone!

          When you say that you are on fire, is it in specific locations? Does the area feel hot to you, or is it like what I have...overheating? I experience several "meltdowns" a day, and sometimes I am not even doing anything! My head gets hot (you can feel the heat coming off of my scalp) and I begin to pour sweat, my whole body will go clamy as well. Then, cog fog and muscle fatigue sets in and it is lights out for an hour or so. Not one Dr. has been able to explain this, or definatively attribute it to the MS.

          Hugs,
          Cris

          Comment

            #6
            Originally posted by arisingphoenix View Post
            Sashi,

            I have something similar to the "seizures". I don't know that it is happening, but usually when I am on my last leg and konk out, I have been told that my entire body starts to "tremor/shake" by my boyfriend. It has only happened a few times but it seems that you are not alone!

            When you say that you are on fire, is it in specific locations? Does the area feel hot to you, or is it like what I have...overheating? I experience several "meltdowns" a day, and sometimes I am not even doing anything! My head gets hot (you can feel the heat coming off of my scalp) and I begin to pour sweat, my whole body will go clamy as well. Then, cog fog and muscle fatigue sets in and it is lights out for an hour or so. Not one Dr. has been able to explain this, or definatively attribute it to the MS.

            Hugs,
            Cris
            Cris, the "burning" feeling was in my left foot and left hand especially, but also to a lesser extent in my left leg, arm, and face. Those areas weren't hot to the touch, and I wasn't sweating or anything. The skin just felt like it was on fire! (It's called paresthesia. I've had it before, but it's been awhile.) It finally let up a bit, though it seems to come and go and is worse at night. I took some gabapentin (Neurontin) which seemed to help a lot.
            Joy is not the absence of suffering. It is the presence of God.
            Cut aspartame from my diet in 2012 and my symptoms have slowly disappeared. Interesting!
            Alpha Lipoic Acid (200 mg) + Acetyl L-carnitine (1,000 mg) = No more fatigue for me!

            Comment

              #7
              Sashi, I am going through the same thing now except the seizures. I always have the hug, muscle pain and fatigue. Now I'm having the burning again. It is in my thighs. Sometimes I look down to see if they are really on fire. That's how bad it is. My neuro put me back on Gababentin. I think I'll start that tonight. I hope you get relief very soon.

              Take it easy.
              "Irrespective of what happened yesterday or last year, and what may or may not happen tomorrow, the present moment is where you are-always!"
              Richard Carlson, PH.D.

              Comment

                #8
                Have you googled low dose naltrexone for ms? It does not help the burning but helps with the seizures for me at night. I can really see the difference if I don't take it for a few nights.

                God Bless you.

                Comment

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