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Approaching Year 7 of my MS Journey

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    Approaching Year 7 of my MS Journey

    Hi there! I'm new to this group but not so new to MS. I am 39, and my 7yr MS anniversary is on April 13th. My diagnosis of RRMS was pretty swift, having symptoms of numbness ascending quickly as well as causing me to limp. Was put on the urgent list to see a neurologist and got my diagnosis in only a few weeks. My MRI showed over 20 lesions on both my brain and spinal cord.

    Looking back there were little things here and there that started in my teens, but nothing as dramatic as when I ended up being diagnosed- beginning with a numb foot and within a week my whole right leg, stomach and breasts were so numb it felt like my body was novacained (like when you go to the dentist).

    I have a supportive hubby who has been with me from the beginning, and two teens (14yr old son, 17yr old daughter). It has been a challenge at times for me and my family, but we have all adapted as best we could. Even so it has caused all of the family to have disappointments and frustration.

    I am still able to walk, though I use a scooter if I am going to go a shopping at a mall since my legs won't carry me that far and the fatigue is just too overwhelming. I also have cognitive issues with memory, brain fog, etc. Currently have numness over 50% of my body- haven't had normal feeling in the palms of my hands for maybe 2 or 3 yrs. Currently also limp when I walk/hobble due to weakness and spasticity on my left side, and am unable to run- can't actually remember the last time I was able to run. Also have balance issues- and get occasional looks in public where people think I am drunk. Bowel and bladder too(although this is improving).

    I have been on Rebif from the start, but have just joined a drug trial for Ocrelizumab. In this trial one is either on Rebif or Ocrelizumab- you just don't know which one. Got my first IV infusion on Friday- had minor reactions (mild rash that disappeared quickly). Not positive but think I may be on the new drug. I feel fine so far, but am hoping that I will see improvement while in this two year trial. This last year has been my worst year so far on my MS journey. On the whole I have stayed positive, but as I told my research nurse when I decided to join the trial- "I am sick and tired of being sick and tired."

    #2
    That's really great. I'm glad to see a study which doesn't have a placebo, but rather, compares to an established treatment. After all, it should at least be better than existing medication.

    I hope you do well with it.

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      #3
      swift dx

      My Dx was quite swift as well... 1st symptoms July 2006, lp Jan 2007 with confirmation of 5 bands.
      Enrolled in a clinical trial (free meds for 4.5 years!) and am now on Copaxone. Fairly sx free except for cognitive issues and lethargy and dizzyness late in the day.
      RRMS: dx:March '07. Started CombiRx June 2007 - Avonex or Copaxone or Both; Study unblinded Nov.2011 - have been on only Copaxone.
      "e lascia pur grattar dov'e la rogna" (Dante "Divine Comedy")

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        #4
        Hi, I am 37 and also was dx quickly ten years ago. I am on rebif (on and off because of pregnancies). I too, can't run and limp if I have done too much walking (which doesn't take much) I feel like I need to try a new dmd. I hope you have the real drug and that it works well for you
        dx 2002 rebif 2002-2013 Tecfidera 2013

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          #5
          I am also approaching Year 7 of my journey. I was diagnosed December 15, 2006 and was on Rebif from March 2007 until December 1012. I have started on Tysabri now. I have had three infusions so far. I wish you all the best.

          Comment


            #6
            7 year marker, too

            It has been officially 7 years. I have one significant episode about 20 years ago. That is how long I probably have had MS.

            I was diagnosed fairly quick like, too. I had fatigue, still could go to work and raise two young kids (7 and 3 at the time.) Kind of hard to diagnose what I called grumpy mommy. But, 6 months later, I developed numbness on my face and was diagnosed in one week. The advantage of working in the healthcare system.

            I am no longer able to work full time. I work at the minimum of 9 hours per week. The mom of busy boys that have many activities, that I try to experience with them, if I can.

            I have the limp that gets worse if I walk any distance. If I would not be stubborn and use my cane more often, I would have a less limp and not as soon, when walking. I am in the water doing water aerobics at least 3 times a week.

            The biggest thing that I still struggle with, is balancing what I can and what I should do, physically. I use to have a nice balance. But, struggling with that balance again. Wanting to do well.

            This past year has been my best year. That has to do with other issues and change of medications. I have received many compliments at how well I look.

            Hang in there and do the best that you can. That is usually the good rule of thumb. The best that you can.
            God Bless and have a good day, Mary

            Comment


              #7
              Hello and Welcome JHO!
              When I can laugh at my experiences, I own them and they don't own me!

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                #8
                JHO,
                Were you ever on Rebif for your "MS treatment"? I am curious, as many people need to be exposed to something at least once before they have an allergic reaction (not ALL the time.......sorry if I just confused you).

                I hope what EVER you are on, it helps you!!
                Live simply. Love generously. Care deeply. Speak kindly.

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