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WHAT WE HAVE TO PUT UP WITH!

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    #1

    WHAT WE HAVE TO PUT UP WITH!

    I have recently posted about the problems I have been having with my legs and how it is affecting me emotionally. Well emotionally I am much better off. I am back to old self. But physically not so much.

    It's so much the pain. Don't get me wrong I still have leg pain but more so the stiffness in my thighs making it extremely difficult to walk. I have to walk a lot in my job and by mid afternoon my legs have had it. When I get home it's all I can do to walk inside. This has been going on for about two weeks now. I just had a relapse about three months ago.

    But all these things we have to put up with. It's enough to drive a person mad.

    This morning my legs started out the way my day normally ends. So when I left for work I brought my wheelchair and rollator. Unfortunately I've used the wheelchair more than the rollator. My DW blames it all on the Avonex. Legs problems and fatigue.

    I haven't told her but I think I maybe progressing to SPMS. Though I've only been DX for almost five years my first Neuro and I believe I have had MS for at least ten years. It took twelve years to get a DX. I see my Neuro Friday so I guess I'll know more then.
    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
    Tags: None
    #2
    Thinking of you and hoping that you can start tomorrow pain-free and that the neuro has some ideas on how to proceed. You are a trooper.

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      #3
      Praying for a better day today!

      Comment

        #4
        being housebound from November – April due to snow. I like the four seasons, but I do not like this. Oh, and a long with being housebound due to snow, I also get the pleasure of having to stay in the driveway when the yard is wet ( after it rains or due to my wifemowing the yard and the dew). Now that I think of it, there are a lot of things I could put here, but there is only so much room and I only have so much time, so, to be continued!(?) six
        hunterd/HuntOP/Dave
        volunteer
        MS World
        hunterd@msworld.org
        PPMS DX 2001

        "ADAPT AND OVERCOME" - MY COUSIN

        Comment

          #5
          I'm sorry Waydwnsouth1, MS certainly sucks big goose eggs.

          From the beginning this disease has affected my mobility (leg pains, leg weakness, and stiffness).

          Do you know that leg stiffness and possibly the leg pain is part of Spasticity? Do you use a muscle relaxer? If not you might ask to try one. Between using a muscle relaxer and PT you might see some improvement (fingers crossed) with spasticity.

          I am a very strong believer in exercise, it doesn't work for everyone but it's the only thing (I believe) that has kept me mobile.
          Diagnosed 1984
          “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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            #6
            I'm sorry you are having some bad sxs with you legs and I pray you will feel better soon.

            Hopefully you neuro can help.
            God Bless Us All

            Comment

              #7
              I hope you get some relief.

              As for SPMS, I think doctors hesitate to make that diagnosis if there is any chance you are still RRMS. Since you had a recent relapse, I would be surprised if your doctor does put that label on you.

              Once SPMS, then the medication options change, as most DMTs not authorized for SPMS. And we all know our docs like to stay as optimistic as they can for as long as they can.

              I hope you have a good appointment Friday.
              Kathy
              DX 01/06, currently on Tysabri

              Comment

                #8
                R is the important letter

                Years ago, with my condition worsening I asked my Neuro if I was SPMS. He literally put his fingers in his ears and told me that not having the word Remitting in a diagnosis would result in me being denied usage of most DMD's.

                Now I am formally diagnosed as Progressive Remitting MS. Go Team? I am also not on any DMD's currently and I think I'll leave it that way. Aubagio is my only option, my gut tells me no.

                When my son was in the Marine Corp. I told him to listen to his gut, it always seemed to keep him out of trouble as a teen. Time to follow my own advice. Right now, I'm ok as ok as I can be.

                Peace,
                Anna

                Comment

                  #9
                  Yes hobbit! R as in Reality. It's the same as 'R'eal swift kick in the crotch! All that you need to know is the MS community is the toilet paper of the chronic diseases. Be glad that your neurologist keeps you in the R-R pool ! You can continue to receive treatments, even though ALL of the treatments are FDA approved for the treatment of relapsing remitting MS. I'm Primary Progressive and my neurologist has me on Tecfidera because there is nothing approved for PPMS. Good luck

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