Announcement

Collapse
No announcement yet.

giant cell artritis?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • giant cell artritis?

    anyone heard of this disease...it can morph into temporal cell arthritis????

  • #2
    Helen one time they thought I had that,turned out I had vasculitis.Is that what they think caused your blindness?I hope things are improving for you my Friend.hugs Marie

    Comment


    • #3
      yes and no marie..theyre sorta stuck on it as a cause but cant pin it down....but something interesting happened this evening its an unusual disease and i discovered two of our friends have just come down with it....no relationship to each other....and i thought it strange...almost as if its like a virus or something...and you cant pass it on it seems....odd eh

      Comment


      • #4
        Originally posted by Mykidsmom View Post
        i discovered two of our friends have just come down with it....no relationship to each other....and i thought it strange...almost as if its like a virus or something...and you cant pass it on it seems....odd eh
        Now the fact that others you know have "come down" with it rings my alarm bells. When I hear of a diagnoses of something unusual around the same time I always think that there has been a medical conferance/paper detailing this condition and everybody wants a patient who has it! So if the symptoms are even vaguely the same thats the diagnoses! Yeh...I am cynical! Tell them to dig deeper before any of you believe them

        Comment


        • #5
          yea im sorta wondering about it too....its too unusual a disease for three people to come down with just like that..and the drs almost kilt me with predistone last week...im weaning off it this week its going to take 4 weeks to get off it...and one of the guys i spoke to today has just started it...none of us were even on remotely the same dose...something up eh

          Comment


          • #6
            Originally posted by Mykidsmom View Post
            yea im sorta wondering about it too....its too unusual a disease for three people to come down with just like that..and the drs almost kilt me with predistone last week...im weaning off it this week its going to take 4 weeks to get off it...and one of the guys i spoke to today has just started it...none of us were even on remotely the same dose...something up eh
            Sorry about the prednisone Helen,I hate that stuff,even though it does help,once my Hubby and I were both on it and nearly killed each other,I called it roid rage afterwards,those steroids really mess with you.You eat like a horse when you are on them too.Can they not send you to a specialist at all? you need answers,and they need to get off their arses to get them.I am on a rant today lol.hugs to you Helen xx

            Comment


            • #7
              i hear ya about the steroids marie...they almost killed me last week by stopping the steroids suddenly...im back on them now but weaning off and its going to take 5-6 weeks to do that....your right awful stuff...what im worried about is the tests for this disease is vein biopsy, and mine came out negative but other tests came out positive...so they decided i need off the steroids...the other people all their tests were negative but their drs decided to leave them on the drug cos of the immediate danger of having the big stroke or losing sight...now ive already lost sight in one eye........im very confused and i think im having the rage marie lol..

              Comment


              • #8
                They will help you Helen,just make sure you are weaned off them,and remind your Family you will be irratible and to bear with you.You have a really great family,they'll understand.I wish you all the very best with everything Helen.You are always in my prayers.

                Comment


                • #9
                  Yippee.........im pretty excited......my weird illnesses and odd diseases have been finally fecking diagnosed...and im not crazy...

                  the diagnosis is ...giant cell arthritis, which is an autoimmune disease

                  in the past 5 years this disease has caused heart attacks, organ failure, gallbladder explosion, temporal migrainies, cardiac arrest, and the most recent attack this week caused my heart to swell and expel the screw holding my icd in place...and also it robbed me of the sight of my left eye...it causes excessive tiredness, pain everywhere to the extent you think your going mad...it mimics so many other diseases you dont know if your coming or going...and more people in the population have it than actually have been diagnosed...women are more prone to it than men...although everyone i know with it is male..the worst thing about this disease besides the obvious is ive gained almost 50lbs in the past 5 years which is almost half of my original body weight........and i was at the stage i was starting to think maybe i am going mad....anyways just wanted to update you all and say............dont ever give up..its taken me more than 25 years to find out what my problem is.

                  and i got diagnosed accidentally............

                  Comment


                  • #10
                    Helen Im so glad to hear this......so now ya know what it is.....what can they do....meds etc...

                    Sorry I havnt been on....really busy and net still actin up....
                    It is what it is.

                    Comment


                    • #11
                      Originally posted by Mykidsmom View Post
                      Yippee.........im pretty excited......my weird illnesses and odd diseases have been finally fecking diagnosed...and im not crazy...

                      the diagnosis is ...giant cell arthritis, which is an autoimmune disease

                      in the past 5 years this disease has caused heart attacks, organ failure, gallbladder explosion, temporal migrainies, cardiac arrest, and the most recent attack this week caused my heart to swell and expel the screw holding my icd in place...and also it robbed me of the sight of my left eye...it causes excessive tiredness, pain everywhere to the extent you think your going mad...it mimics so many other diseases you dont know if your coming or going...and more people in the population have it than actually have been diagnosed...women are more prone to it than men...although everyone i know with it is male..the worst thing about this disease besides the obvious is ive gained almost 50lbs in the past 5 years which is almost half of my original body weight........and i was at the stage i was starting to think maybe i am going mad....anyways just wanted to update you all and say............dont ever give up..its taken me more than 25 years to find out what my problem is.

                      and i got diagnosed accidentally............
                      Helen glad you can put a name to it,at least now you know what you are dealing with.I think a lot of folks actually confuse that with Arthritis,instead of Arteritis,and just think they have aches and pains,not so,as you know all too well.I hope you can get some relief from all those awful symptoms and live life to its fullest in the future.Looking forward to our Mini meet with Eithne.Hugs,Marie

                      Comment


                      • #12
                        me too marie..im sick with excitement for a while i wasnt sure if i could make it cos i couldnt move unless i was taking this predistone....and i mean walk from the kitchen to the living room lol....this morning i took the bike out.. thank god for predistone...the only thing is im getting the moon face but fuck that...thats immaterial lol...

                        im so happy to have a name for this now and know what im dealing with.......hugs..

                        Comment

                        Working...
                        X