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I'm back

Posted , 14 users are following.

heather39822
heather39822

Hello fellow PMR sufferers. I live in that crazy country that switched us off from the world for a week, Zimbabwe. Last night the Internet servers won a High Court ruling against the government to resume the cyber link and I have been catching up with your posts.

I see that the Foum's future may be at a crossroad. I hope there is no danger of closure. It was a lifeline to me on diagnosis nearly five years ago when I was bewildered and frightened and very alone. I seldom post now because I feel so hopeless about this wretched and relentless PMR. That two-year burn out marker was like the Holy Grail and as it disappeared in the mist of time, the pain continued, the Pred wrought its horrible side effects and I sunk into a PMR induced depression which I didn't think fair to burden members with. But I am still an avid Forum reader and gain so much, especially from the contributions of those who have licked the monster.

I fervently hope the Forum continues and its most valuable members are able to continue giving their priceless advice, support and fellowship to those with PMR. BRAVO to you all.

4 likes, 16 replies

16 Replies

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  • nick67069
    nick67069 heather39822

    Posted

    The activity on this forum has all but died down as the "improvements" to the web site were added. Lots have stopped posting and some have moved on to alternate site " HealthUnlocked". I am sure that if you google for it, you will find the link. I would post it here, but then the message would be held for moderation.

    As far as "2 year" mark, it was incorrect, too optimistic expectation. Latest study shows that average time until PMR goes into remission is 5.9 years, not 2. Few go into remission in 2 years ( less then 25%) but are likely to relapse. Some unfortunate 5% stay on prednisone for life, but 95 % will be off steroids at some point.

  • EileenH
    EileenH heather39822

    Posted

    "I didn't think fair to burden members with"

    That is exactly why we are on the forums - it isn't for the fair weather, it is for the foul above all.

    I must be mad saying this - but HealthUnlocked has a very busy forum, sometimes manic, but you can ask a serious question in a new post and get the same sense you get here from the same people plus a load of other very knowledgeable people all round the world.

    https://healthunlocked.com/pmrgcauk

    I tell everyone who mentions it (and many who don't) that the 2 year story is a figment of someone's imagination. I think it is responsible to NOT suggest a short time scale because what has happened to you has happened to many others too.

    • celia14153
      celia14153 EileenH

      Posted

      Thanks so much for the link Eileen. I visited the site and it was bliss to get back to typing easily - the lack of automated punctuation can be such an additional pain. My nickname on the new site is Thelmarina! I know - tricky to find a new one no-one else had..I'll still be back here though - don't want to miss your insights. All a bit sad, and rather a blow for EMISS's marketing hopes I'd have thought.

    • EileenH
      EileenH celia14153

      Posted

      I could have sworn I'd replied to this post this morning - no sign though. That's all I would need!!!!

      You won't miss me whichever site you got to!! Not unless this one gets even worse...

  • EileenH
    EileenH heather39822

    Posted

    I was a bit upset to see the report about Zimbabwe on Sky News this morning and thought of you - are you OK? All looks a bit hard work (no petrol) and scary.

    • Michdonn
      Michdonn EileenH

      Posted

      Hi EileenH, I wss just saying I didn't think there much ice climbing out WRONG! Largest is up in southern Colorado, Ouray!

      We now are up to eight people dead from avalanches, most backcountry skiers. I have never done any backcountry skiing or ice climbing.

      Trying to stay. young , but not that young! ☺️

      Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

  • Emis_Moderator
    Emis_Moderator heather39822

    Posted

    Hi all,

    Rather than take this off topic, if you are having any issue with the site see my post below on another discussion. If you do have issues then please reply in that discussion.

    Alan

    https://patient.info/forums/discuss/hope-the-powers-of-be-are-reading-our-messages-691945?page=1#3458500

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