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    What's next?

    I'm looking to vent a little, I'm all cried out.

    I have been having foot/ankle pain for years, I always assumed it was MS related. I was sick of going to doctors(for multiple issues), so I wrapped it and kept going. I recently went on vacation with my family to Disneyworld and did alot of walking! The pain was dreadful and the wraps no longer helped me so I figured I'd go to an orthopedist to have it checked out. It's much worse than I thought! I have Avascular Necrosis (75-80 percent of my Talus [ankle bone] is dead). The only thing that can be done now is surgery.

    My husband came with me yesterday to hear that it will be at least a 5 hour surgery and that I will be off the ankle for 4 months! Hopefully it will work, if not, I'll have to go through it again. I should also add that they will have to remove a piece of my waist bone to hopefully fuse to my ankle. I will have to have steel rods inserted and my foot permanently fused into a 90 degree angle.

    The doctor has been asking me if I fell or injured it somehow like in a car accident. I don't remember any falls or anything out of the ordinary. He then asked if I had ever taken steroids, I told him yes. It turns out that could definitely be a contributing factor. I turns out steroids are not friends with bones.

    My doctors are suggesting a bone desity scan to see where the rest of my bones are at. I'm 46 years old and I feel like 100! I take Vitamin D and calcium along with multi-vitamins and it wasn't enough.

    I'm also getting ready to restart Rebif. I came home from vacation to discover that after 51 Ty infusions, I'm now positive for the JC virus and had to stop Ty. I just feel like my world is caving in, when is all of this going to stop! I've had more than my share to deal with. I've had many other medical issues, I'm just so sick of all of this. I just can't believe this is happening, how much more do I have to take?

    My extended family is all out of state, my daughter is away at college about to graduate in December. Who is going to help me with my 11 yr old son (with mild autism) when my husband is at work from 5am to 6pm? I know I will figure it out somehow. I'm just really angry right now! Thank you for listening.

    #2
    frustration

    ((((((((MsKitty)))))))) and prayers.

    One moral to this story is never assume that all pain is MS pain. They need to be explored. But, I so understand the sick and tired of seeing doctors. I am there, too.

    Even with this, one step at a time.

    For the rest of those taking steroids, make sure your doctor is doing bone scans. There are many side effects from steroids, they are not alays our friend.

    I have heard that some people stay on Tysabri once they become JVC virus positive.

    I would check with both the MS society and Autism Society and the Multiple Sclerosis Society of America for respid care for your son, or help for carring for him while recovering. Putting your mind to it, you can do it.

    Good luck!!!

    Here is the place to vent.
    God Bless and have a good day, Mary

    Comment


      #3
      ((hugs)))

      vent away, this is def. the place to do it. sometimes it just helps to complain, vent and empty your cup. have someone listen and validate it all for you. I know it helps me.

      What i do when overwhelmed is chunk it out, and dont' look at the whole picture that undoes me bigtime.

      so, take it step by step for right now. im sure the surgery will work and although it sounds like alot of trouble to go thru it'll be great if you can alleviate that horrible pain.

      hang in there and vent away..... sometimes it does get to be too much and crying and venting doesn't compromise our strength it think it makes us stronger.

      sending positive thoughts your way....... hang in there youll get it all done!
      Jen Dx'd 5/11
      "Live each day as if it were your last"

      Comment


        #4
        Thank you both for the positive thoughts, hugs and for listening, I really do appreciate it. I feel a little better having vented. I will figure things out, it will take a little time.

        Lisa =^..^=

        Comment


          #5
          HUGS TO YOU

          Ms Kitty,

          Wow ! It sounds like you have your hands full. Maybe your church will be able to help you out with some volunteers.
          Also maybe you could ask some of your friends to take turns
          helping you out.
          I too am feeling frustrated today. After reading your post, I
          have little to complain about. Just so tired of all the tests
          and no answers--in limboland.
          Hang in there Ms. Kitty. Keep us posted.

          Comment


            #6
            avn

            Sorrry to hear you have AVN...my husband has a kidney disease that required high doses of steroids. Well low and behold he devolped AVN in both hips. He could no longer walk and the pain was unbearable. He had a hip replacement at age 42 and it was like night and day.

            He still has it in the other hip...but not at the point of replacement. Steroids can reak havoc on the bones. I will never have them done again...they don't help anyways.

            You will see the difference after your surgery. It's frustrating when you think your doing the right thing and the side effects end up being the worst!

            Hang in there
            Linda

            Comment


              #7
              So sorry that this has happened to you.

              This should be a wake up call to everyone that you shouldn't always assume that everything that happens to you is MS-related.

              If you don't mind my asking, how often did you have steroids, and was it IVSM or pills ? Was it heavy duty doses ?

              I'm curious because I was on long-term steroids (about 1 year) as a little girl for an AI blood disorder. And I've had IVSM once for three days with a 10-day prednisone taper.

              Comment

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