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    #1

    Caught it early???

    hi everyone,

    Was dx exactly one year ago although my neuro thinks I've had it for 20 or more years.

    He told me that I will be "fine" since we caught it early. What the h*** does that mean? We caught it early.

    Funny thing, I don't feel fine. My legs hurt me every single sec of every single day. He just upped my Gabapentin to 2000 mg a day and I still feel the pain.

    Honestly, I don't know what to do. I cry every night to my DH who is the best thing in my life, but if this is what I have to go thru I don't want to do it. I don't want to live in pain and I know that people have pain all the time with this horrible disease.

    With all this pain and problems walking, how could he say we caught it early?
    Sx's 5/1996 Dx'd 9/2011
    RRMS- Betaseron, Copaxone, Tecfidera, Aubagio
    Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all
    Tags: None
    #2
    Personally I think sometimes clinicians say things, I know I have been unintentionally guilty of this, in an attempt to comfort their patient that in hindsight are pretty stupid.

    I would chalk it up as a possible explanation for his dopey comment. He is a flawed human like us all, I guess. Hang in there.
    He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
    Anonymous

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      #3
      I'm sorry, but as a professional, he should know better than to say "you'll be fine". It isn't a cold.

      Everyone is different, and I hope you have less MS issues, but it is a progressive disease, although we never know how quickly it will effect us.

      Good luck.

      Comment

        #4
        Are you the anxious sort? He may be trying to ease your suffering.

        What he probably really meant to say was "I can't actually help you very much, but you'll probably not going to be as bad as you think"

        Now I can tell you what will help, but you might not like it. But here is my advice: Go to the library and get this: It will help with the pain and any anxiety:

        http://www.amazon.com/Mindfulness-Me...elief+jon+zinn

        Comment

          #5
          Sorry you're having such a rough go with the pain.

          I see you're taking Neurontin, but that only works on neuropathic pain. Much of the pain I have in my legs come from spasticity, in which case the Neurontin will do nothing to help with.

          Have you tried an anti-spasticity med for the leg pain. Baclofen or Zanaflex are two common ones to try. The side effect is drowsiness, but they start you out on a small dose and work it up.

          I eventually had a baclofen pump put in, and I will say that 90 percent of the pain that I get in my legs is from spasticity. I have some sensory pain, like burning feet, etc. But the aching pain, is from spasticity for me. I wasn't sure before, but since the pump, when my pain level starts to act up, I have the pump turned up and the pain eases...so I now know that's what it was all along.

          Ask your dr. about an anti-spasticity, and if you can't get any pain relief from that...see a pain management doctor. We can't have any quality of life if we're in pain 24/7...there are other routes to try, so don't give up. Ask your dr. to be more proactive in trying things for your leg pain.

          Hope you find relief.

          Comment

            #6
            Mommy I suffer from excruciating leg pain myself. I started on the meds about 9 years ago and have had to change meds over the course of time because I was becoming immune to the meds. My pain is so bad I now take 200mg of MS Contin (morphine) a day to control it.

            If your pain is anything like mine you cannot function on a daily basis with that kind of pain. I would visit your PCP and have him/her rx something. Gabapantine is not going to do the trick, I tried that too. In fact I tried all sorts of other meds before going to narcotics. But in the long run thats what I ended up on and that is what is helping.

            Good Luck to you, I certainly feel for you!!
            Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

            It's hard to beat a person that never gives up.
            Babe Ruth

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              #7
              RDMC...... Can u clear up spasticity?

              Thank you to everyone who responded and had advice. Honestly, I just don't know what to do anymore.

              RDMC.... You talked about spasticity and if that's what I am feeling then the neurontin isn't going to work which clearly it isn't. I have numbness in my legs but the pain I feel is in both my upper thighs and they just ache beyond belief constantly, like a deep ache, not like a Charlie horse. I do have that feeling on occasion in my calf where I can't pick up my leg to get into the car but that is not all the time. So how do I know what type of meds will work for this pain?
              Sx's 5/1996 Dx'd 9/2011
              RRMS- Betaseron, Copaxone, Tecfidera, Aubagio
              Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all

              Comment

                #8
                The stiffness, not being able to pick up your leg, and quad ache sure sounds like spasticity to me...but I'm not a neuro. Ask him if you can try a low dose of an anti- spasticity med like baclofen or zanaflex...if it works , then it's spasticity.

                They usually start you on a small dose, and then can up the dose. but even at a small dose you should be able to notice if there's a difference in the pain. Neurontin mostly works for sensory pain, baclofen or zanaflex works for the stiffness and pain resulting from spasticity.

                Before I got my pump, I called it my "walking around pill" because when my legs would start to ache, it was almost like clockwork, I'd need more med in order to keep walking around. they are very short acting meds, probably 4 to 6 hour window of efficacy.

                Spasticity is a very common symptom of MS.

                Comment

                  #9
                  Thanks for clearing that up rdmc

                  Thanks for the clarification. I will definitely check with my neuro on my next visit and hopefully the spasticity meds will do the trick!!!
                  Sx's 5/1996 Dx'd 9/2011
                  RRMS- Betaseron, Copaxone, Tecfidera, Aubagio
                  Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all

                  Comment

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