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I Have Polymyositis

A Polymyositis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Polymyositis. You're not alone. 69 People

    Finally An Answer

    For 3 to 5 years I have had numerous and varied symptoms of weakness, trouble swallowing and shortness of breath. At the time, there always seemed to be a reasonable answer, but my GP didn't like certain things showing up in my blood tests and sent me to a neurologist in June of...
    Becca2002 Becca2002 66-70, F 1 Response Apr 21, 2012

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    I'm 52 And Was Diagnosed June 2011. No Improvement.

    I've been on 60mg prednisone for 1 1/2 yrs, had two 8 hour retuxin infusions, tried methotrexate which made me deathly ill, and nothing has helped. I am still able to get around with some difficulty; mostly stairs and standing are my problems. My CK levels indicate I am in...
    theboles theboles 51-55 2 Responses Oct 8, 2012

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    My PM Story

    Diagnosed in 1999 while in Thailand. Once back in the US was seen by several "specialists" and tried to understand the inexplicable. A great band sings"If I knew now what I knew then..." I have been on the typical cocktail of meds with prednisone as a constant...with years of...
    Turtlepace76 Turtlepace76 36-40 1 Response Jun 18, 2013

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    Diagnosed With Pm At The Age 29

    I was just diagnosed with polymyositis back in November 2012. It started with significant swelling in the feet and ankles then gradually moved up to the legs. At first I didn’t think nothing of it base on the fact I have no medical conditions. I been to two different hospitals...
    MrsOnenonly MrsOnenonly 26-30, F 6 Responses Jul 12, 2013

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    Just Diagnosed

    I was just diagnosed with polymyositis about 2 weeks ago. It all started with my throat and food feeling like it was getting caught. That went on for about 8 months. Then the front of my neck was very stiff for about 4 weeks. That started to go away and i was feeling like i might...
    shawshaw26 shawshaw26 41-45, F 2 Responses Apr 25, 2013

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    Is There A Happy Ending To This?

    I was officially diagnosed with Polymyositis about 2 years ago. My symptoms first occurred about 6-7 years ago; around the time my youngest son was born. I started to have a hard time lifting things over my head. Then I started to get clumsy. As it got worse, I couldn't carry...
    J9yRul80 J9yRul80 31-35, M 3 Responses Sep 25, 2013

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    I Have Polymyositis

    I just found out I have this rare diease , polymyositis. I've never heard of this before. My body been going through changes for seven years. I had all kinds of tests done through the years, the doctors could not figure out what was wrong with me until seven years later.
    esseyb123 esseyb123 26-30, F 3 Responses Sep 21, 2010

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    Need To Know What To Do To Help This Im Starting To Give Up

    Hi my name is will I was diagnose with polymyositis 6 years ago after a muscle biopsy but I had a sorry doctor who didn't follow up all he did told me to do ivgg but my insurance ran out and I had to stop , f or five years I been in a wheelchair .I been to doctors but all they...
    Pooh2414 Pooh2414 31-35, M 1 Response Jul 19, 2012

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    About Me

    When I first wrote my story, it was about my feelings on my disease, but that's not me. I may be over 60 but definitely don't think about it. I still see a "strange" reflection in the mirror. That's not me, that's an old person? I drive a bright red jeep grand cherokee turbo...
    Becca2002 Becca2002 66-70, F 2 Responses Apr 21, 2012

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    Djs34

    54 year old man recently diagnosed with polymyositis, experiencing weakness of the proximal muscles in my upper arms and upper legs. High doses of prednisone have not helped. Starting combination of methotrexate and ivig. Eager to hear from others and to learn what to expect...
    Djs34 Djs34 51-55, M 2 Responses May 2, 2013

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    Polymyositis - Yes You Can Be Cured!

    If you read on any website or in medical books that there is “no cure” for polymyositis, just don’t believe it, as a full and lasting recovery is possible. I was diagnosed with polymyositis in 1981, at age 26, further to muscle weakness and pain, blood tests, a biopsy and...
    Nelligan Nelligan 51-55 15 Responses Oct 20, 2010

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    Adipose Stem Cell Treatment For Polymyositis?

    I have had polymyositis for over 7 years and all the usual treatment (prednisone, methotrexate, IVIG infusions, rituxen infusion) don't seem to help. I have more bad days than good, barely walking, and getting up from a seated position usually requires assistance and I've lost...
    seberlin seberlin 46-50, F 3 Responses Oct 14, 2013

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    Meds...

    Can you tell me what meds you taking? and if they help
    cassie87 cassie87 26-30, F 4 Responses Sep 18, 2013

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    Oh The Joy Of Polymyositis

    Before Aug 2008 i was a very "normal" girl, well compared to now. I was working and taking a break from college to plan my marriage. I didnt know it then but the weakness and acheyness was all for a reason. I woke up one day with pain in my shoulder, as the day progressed it...
    txangel1019 txangel1019 22-25, F 8 Responses Mar 8, 2012

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    Me And Poly.

    I have been dealing with poly for about 20 years.I am glad to see that there are others that understand the dealings on what poly can due to you not just physcially but mentally.
    allen180 allen180 31-35, M 2 Responses Aug 7, 2012

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    Diagnosed December Of 2012

    After about 5 years of getting weaker and weaker, I started to fall on a daily basis. The bad part of this was that I couldn't get off of the floor without help. My daughter was with me one time when I fell and she insisted that I see the doctor. I was diagnosed right away and...
    genesjulie genesjulie 46-50, F 3 Responses Jul 18, 2013

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    I Was Diagnosed With Polymyositis After Suffering A Cardiac Arrest.

    Around September 2010 I started to notice that I was feeling very tired and fatiged most of the time. I wasnt very motivated and I didnt have very much energy to do the day to day tasks of life, for example cooking, cleaning, shopping etc. By December I had started to notice that...
    Alive2011 Alive2011 36-40, F 17 Responses Dec 29, 2011

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    Polymyalga My Old Foe

    I started with Polymyaga about 16 years ago, I was on prednisone high doses for about two years, pain in shoulders, I was lucky as the symptoms went on the drug, after two years the symptoms went and I was free untill two years ago after surgery and back the symptoms came. This...
    1mrsandy1aa 1mrsandy1aa 70+, F Apr 29, 2013

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    Need To Know What To To Help This Im Starting To Give Up

    Hi my name is will I was diagnose with polymyositis 6 years ago after a muscle biopsy but I had a sorry doctor who didn't follow up all he did told me to do ivgg but my insurance ran out and I had to stop , f or five years I been in a wheelchair .I been to doctors but all they...
    Pooh2414 Pooh2414 31-35, M 4 Responses Jul 19, 2012

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    Fighting Back

    I was 35 years old. Very healthy, very active, enjoyed hiking with dogs and family, about to be married. I had just gave birth to my daughter, within weeks of being home I knew there was a problem. Simple things like tying my shoe, or picking something off the floor became a...
    charjay charjay 36-40, F 5 Responses Nov 14, 2013

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    Living With Polymyositis

    In 2007, I was diagnosed with polymyositis. It took so long to find someone to do a muscle biopsy that I was down to106 pounds before i could be diagnosed. I was placed on 250 mgs. of predisone to save my life and after two days my medication was dropped to 200 mgs. This sudden...
    m9239 m9239 61-65, F 2 Responses Oct 25, 2012

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    Living With Polymyositis At 24yrs Old

    I was diagnosed over a years ago. I was working full time and just had graduated college on a criminal justice degree. Life was going good for me not much to complain until February 2,2011. I slipped down stairs and my life changed forever. In a couple weeks my back started to...
    Cinthya0321 Cinthya0321 22-25 6 Responses Nov 16, 2012

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    My Mom

    My mom had this from the age of 23/24. Symptoms must have started before but as it seems quite rare docs didn't seem to no much. She passed away age 39 a month before her 40th. 2004 an I miss her like crazy.
    cassie87 cassie87 26-30, F Sep 18, 2013

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    Poly And Me

    It is May now, I wrote last in January? Can't remember. My CPK did go down from 5000 to 600 then to 363....but it went up slightly. The doctor thinks it is from lower dosage of prednisone, 10mg every other day. Or it could be from daily exercise that PT prescribed to me. So my...
    haroldinek haroldinek 61-65, F May 4, 2013

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    Related Experiences

    Feeling down this morning. Have really been struggling with my anxiety the past few weeks.. Granted I'm almost to final exams week so things are always more stressful.. But I just...
    Anxiousgirl13 Anxiousgirl13 18-21, F 1 Response 3 hrs ago

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    They say some girls you take home to mom, some girls you just take home. I'm 45 and have never gotten a marriage proposal. I finally put a "Do not disturb" sign on my pu**y and...
    sacredfire222 sacredfire222 41-45 2 Responses 7 hrs ago

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    This may sound a wee bit silly to a lot of fokes. I have a best friend, he is 11 years old, he is very comforting to me. he does not question me, he likes to sleep on my clothes...
    flyingangel7 flyingangel7 46-50, F 10 hrs ago

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    My family was more involved with making people believe we lived some perfect or amazing life but reality...it was all a show. Now, in comparison to others experiences i had it...
    bandelt7 bandelt7 26-30, F 2 Responses 9 hrs ago

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    So I guess it mostly all started when my best friend unexpectedly passed. We were fourteen. From then on it was just downhill. I still had my initial group of friends throughout...
    PassionEarth9 PassionEarth9 22-25, F 1 Response 1 hr ago

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    What should I do!? I really want a baby, I'm nearly 14.. I've always wanted one and I know what I would go through with it. I look after my nephew nearly every week since he was...
    jesshobson jesshobson 13-15, F 2 Responses 1 hr ago

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    I have an adopted sibling that I have never met. I wonder about him often, and I wish I could let him know that it's not his fault, actually he was the lucky one to have made it...
    HappyOnTheInside HappyOnTheInside 22-25, F 18 mins ago

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    what is the best medicine for pmc ? is it diamox. do we have have to take diamox for the rest of our life?
    jkt2014 jkt2014 26-30, M 8 hrs ago

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    I have decided to just live a happy life being a good person. There are so many things that I have to be thankful for & I do feel blessed
    PyjamaCat PyjamaCat 36-40, F 2 Responses 7 hrs ago

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    I had a strange dream that I got an email from a girl I had fallen out with a year or so ago. We haven't spoken since so I thought it was weird I had a dream she emailed me. So the...
    katwilliams87 katwilliams87 26-30, F 6 hrs ago

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    I'm hoping talking a little more will get this out of my system a little, but I was robbed at 3am on a Thursday morning whilst staying in my Uni house. I was only back to write an...
    TheMagicMan66 TheMagicMan66 18-21, M 3 hrs ago

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    When I was in 5th grade I wasn't feeling too well. I had a fever and I was throwing up all the time. Turns out I had to have surgery to take out my swollen appendix. Now I have a...
    conzy112 conzy112 18-21, F 2 Responses 3 hrs ago

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    Madcloud123 I am bored lol and going to sleep, add me if you have something interesting to share. If it gets bombarded by nasty stuff I guess I'll just change accounts lol...
    Hidebehindtherain Hidebehindtherain 26-30, M 1 hr ago

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    1. I'm an extrovert. 2. Indecisive as hell. 3. I'm straight. 4. I was born a month early. 5. I have many friends, but only consider 3 of them my closest friends. 6. I will...
    karmadarling77 karmadarling77 13-15, F 1 hr ago

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    I stayed in the sun for hours. I woke up the next day and have literally 6. I feel so ugly, and I'm sixteen and have to go to school again tomorrow. It really sucks because I lose...
    maddyh129 maddyh129 18-21, F 1 hr ago

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    My goodness, I'm in the throws of limerence and given the situation, I can't cut off contact with my LO in order to get some emotional peace (not that I really want to...). Part of...
    Justsilence Justsilence 31-35, F 42 mins ago

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    It came out of nowhere. It started in like the 5th or 4th grade and its built up since then. I like my birthmark, but I think it lowers my confidence whenever I have to talk to...
    Kperr14 Kperr14 13-15, F 8 mins ago

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    I really felt alone with my anxiety, until I started to post on here. Somehow, I think writing my thoughts out, actually helped me. Sure I still have anxiety, but it's not as worst...
    HawaiianPunchz HawaiianPunchz 16-17, F 4 Responses 10 hrs ago

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    Problem. My girlfriends ex wants us dead. I noticed a guy with a camera standing in an ally across the street. I didn't think to much of it at first but when Sarah went out to get...
    whattodo32 whattodo32 18-21, M 1 Response 7 hrs ago

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    Maybe he's given up? God, I hope so. Maybe He's been there the entire time and I just haven't noticed Him.
    WeskaDarkstar WeskaDarkstar 26-30, F 1 Response 6 hrs ago

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    Its been a few months since posting and I can say that Im still in the same situation. He left for a while, as normal. This time was different though. He left and his ex gf got...
    ammyyy ammyyy 26-30, F 1 Response 3 hrs ago

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    I have anger issue with my some of my husband's family. It is so hard to forgive and let go of my hatred and anger! So sad. I want it out of my system but I just can't get away...
    Pinkdiamond9 Pinkdiamond9 31-35, F 2 hrs ago

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    I have never really had control over my bladder. It would always go during the worst possible times like last week. I went for a job interview and I just felt my pockets get wet...
    whattodo32 whattodo32 18-21, M 1 hr ago

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    my god i need to get back on my medication, i don't know what's wrong with me, i'm constantly paranoid about what people think of me and i just keep having random bouts of crying...
    chewie2404 chewie2404 18-21, M 1 hr ago

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    I admire my toes and feet. I have slender feet with long toes. I paint my toenails regularly and love sliding rings on my toes.
    prettytoes prettytoes 22-25, F 29 mins ago

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    I am a 43 yr. old female and finished my chemo infusion this past March. I would like to talk with people who have the same cancer and are also female. It's rare, but more so for...
    ddetlor ddetlor 41-45 21 mins ago

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    It's subsided for now with the help of my doctors and therapist and family it's an ugly feeling to have .... Even scary to look back at . I remember wanting to drive my car into...
    Briinx Briinx 31-35, F 17 mins ago

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    I have done a lot of slutty things, some I'm not overly proud of but I regret nothing ;)
    bd693 bd693 18-21, M 16 mins ago

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    It's bad because I'm only 18. But I will wait and will definitely not let it happen. I have some serious baby fever though.
    Madii144 Madii144 18-21 6 Responses Mar 21

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