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    #1

    Pagets Disease!

    Hi all! I've been diagnosed a year and a half with MS and still not on treatment with the repercussions from Rebif and was ready to go on Aubagio........but now being checked for Pagets Disease. Anyone else have it or could give me info. My health has gone in a spiral since Rebif and I don't think I can take too much more. My liver has been affected, depression which put me in a physc ward. Although, I've had severe depression since I was 13. I'm a mess with so many other health issues. I'm almost embarrassed to name how many. I'm doing everything possible. Counseling, support groups etc....etc... I feel like my body is a decaying cavity. I was soooooooo positive when I began my diagnosis and I feel crushed to my soul. And now checking for Pagets. Please.......anyone with info would be of great help to me........

    Happy New Year and may 2016 bring just a bit of positive health for all of us.

    Diamond


    Diagnosed 6-28-14
    RRMS
    Alone we can do so little; together we can do so much. ~Helen Keller~
    Tags: None
    #2
    I'm so sad no- has commented of this post.
    Diamond xooxox


    Diagnosed 6-28-14
    RRMS
    Alone we can do so little; together we can do so much. ~Helen Keller~

    Comment

      #3
      So sorry, Diamonds. I think the readers, on this site, are very complacent or simply unaware of this condition. I am completely unaware! Good luck

      Comment

        #4
        Had to look up Paget's Disease on Dr Google. I can't do links on this iPhone, or I'd do some.
        Here's hoping you don't have it.

        I'm sorry you are feeling so awfully unwell.
        And I return your hopes for a better year ahead. All the best.

        Comment

          #5
          I, too, had to look this up, Diamond, as I'd never heard of it before. You have always been a bright light here and I'm so sorry you are down in the dumps. I hope you do not have to add Paget's to your list

          Keep us up to date on what you find out
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

          Comment

            #6
            I haven't been here for a couple days. I also had to look up Pagets, I don't have much to add to the comments.

            I also had a rough time with Rebif. I've been diagnosed with tumors in my head. And depression too. Seems like MS just isn't enough to live with, we must have all these other various things to cope with too.

            Just know Diamond, we are out here in Web land. And we have each others back. Please let us know how you are doing.
            Karen

            Comment

              #7
              Hi Diamond,

              I'm so sorry for all you've been through, and that you are now bring tested for this disease. I know you've had a really hard time. Rebif really did an awful number on you. It put me in the hospital for an an awful 3 straight months, but am lucky not to have any permanent damage. I'm assuming something showed up on your bloodwork before you could start on Aubagio? That's often how it's detected. I don't know much about Paget's disease (also had never heard of it before), just what I learned from Dr. Google at WebMD and the Mayo Clinic.

              From WebMD:

              "Paget's disease is a problem of abnormal bone growth. It may affect just one bone, but it usually affects more than one.

              -In normal bone, the bone tissue is constantly being broken down, absorbed into the body, and then rebuilt with new cells.
              -In Paget's disease, bone tissue is broken down and absorbed much faster than normal, so the body speeds up the bone rebuilding process. But this new bone is often weak and brittle, and it breaks easily.

              Paget's disease is most common in people older than 50, and the risk of getting it increases with age. Most people who have it are able to lead normal lives." The last sentence is encouraging, but of course with MS, we aren't "most" people." We are already set up for osteoporosis after the use of corticosteroids, and decreases in physical activity. Falls aren't always the kindest to our bones, either (been there, done that ).

              The bones usually affected are the skull, pelvis, legs, and spine. The same medications used to treat osteoporosis are also used to treat this disease.

              Doesn't seem fair some of us have to deal with so much. I hope it turns out you really don't have this disease. I'm sorry you are feeling "crushed to your soul." What sorrowful words. You are always such a kind, sweet soul to all of us here! I'm glad you are reaching out for help, there's really only so much we can shoulder alone.

              Take care, dear Diamond. I hope 2016 is much kinder to you! I'll be praying for you. Please keep us updated.
              Kimba

              “When you change the way you look at things, the things you look at change.” ― Max Planck

              Comment

                #8
                Love You

                Hi!

                Can't tell you how much you all mean to me. I've always had a special feeling for Kimba and Seasha. All of you are AWESOME. I have more tests end of month and an appt. to a new Dr. Tomorrow will be my first MRI Since I was diagnosed. Have to wait until I see my neurologist on Feb. 15th. I have someone drive me that distance and have to go according to her work schedule. She was my boss and is my best friend and her and the hubster have been with me from the beginning. Again ~Thanks for all the support~ and May 2016 better for each and every one of us........even if it's a small triumphant!!!

                My Best....
                Diamond


                Diagnosed 6-28-14
                RRMS
                Alone we can do so little; together we can do so much. ~Helen Keller~

                Comment

                  #9
                  Hi Diamond, I am sorry that you are dealing with multiple challenges, it does make things very difficult to figure out how and what you are treating at any given time. And if MS is not enough

                  Unfortunately, there are many of us that are juggling more than one ailment. I don't have any words of wisdom other then to let you know that we are here to support you.

                  Let us know what you find out through your testing. I am praying that you feel better soon.

                  Comment

                    #10
                    Pagets disease complicated

                    Originally posted by Tia1 View Post
                    Hi Diamond, I am sorry that you are dealing with multiple challenges, it does make things very difficult to figure out how and what you are treating at any given time. And if MS is not enough

                    Unfortunately, there are many of us that are juggling more than one ailment. I don't have any words of wisdom other then to let you know that we are here to support you.

                    Let us know what you find out through your testing. I am praying that you feel better soon.
                    I have followed you and others on this forum. You have been a positive roll model for me. I just wanted. To say I don't think anyone is complacent. I believe that they just didn't know enough to reply. Like me! This is a very complicated disease and you may not have it. They are still testing right? I would try to stay away from google for now at least until you get final diagnosis. I hope they are wrong and any tests confirm it! Dont lose hope!

                    Lynn

                    Comment

                      #11
                      Lynn,

                      That was very thoughtful. A role model you say...................hope I can get back to that point. I almost feel greedy for asking asking our higher power to give me SOME relief. I look at others who have it so much worse then I do. I used to do soooo much volunteer work back in the day. And everything........I repeat everything seems like so much effort right now. I know it WILL get better. I pray and light candles for everyone.

                      Love you all.....
                      Diamond


                      Diagnosed 6-28-14
                      RRMS
                      Alone we can do so little; together we can do so much. ~Helen Keller~

                      Comment

                        #12
                        Hey Diamond!
                        Not Fair!!
                        You've always been so upbeat about all the craptastic challenges tossed your way, I'm so sorry you've had another to (possibly) add to your juggling.
                        Paget's sounds just as difficult as the rest. I wish you strength & good luck.
                        HUGZ
                        "Hope for the best and plan for the worst. That way, all your surprises will be pleasant."
                        Verin Mathwin, The Wheel of Time by Robert Jordan

                        Comment

                          #13
                          Dont know squat about Pagets Disease.

                          But I do know what it is like to live with several diagnosis'. Its not right that someone with MS get diagnosed with anything else...curses.

                          Hang in there.
                          Katie
                          "Yep, I have MS, and it does have Me!"
                          "My MS is a Journey for One."
                          Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                          Comment

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