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Confused

Posted , 7 users are following.

carol16456
carol16456

Yesterday I asked if anyone lives near me in hertfordshire , to meet up for a coffee . The one reply I had was from a group asking for support or to join , with regards to smoking illegal substances .I am surprised that anyone can get into our mail , I thought we corresponded privately .

0 likes, 24 replies

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  • carol16456
    carol16456

    Posted

    Also I have found I now have two different headers with my name
  • constance.de
    constance.de carol16456

    Posted

    Good heavens!  It just shows you doesn' it?  I thought we would be safe from such things on a site like this!!!
  • tina-uk_cwall
    tina-uk_cwall carol16456

    Posted

    Hi carol, on your original  first thread, the one with the odd reply, click on the report flag at the bottom and report both your problems. Either I missed this thread or I ignored it because I don't live in Hertfordshire, although i might be passing through there on Sunday on route to visit my mums grave in Finchley. Good luck. Christina 
  • EileenH
    EileenH carol16456

    Posted

    I hope you reported it immediately using the report flag at the bottom of every post - very faint but it is at the bottom left corner of every post. Any dodgy post should be reported as soon as you see it, including abusive or bullying ones and by clicking on report it is seen immediately and dealt with, it takes a bit longer at weekends. Anyone who repeatedly offends will be banned and any spam/advertising posters will have their account removed immediately.

    No - anyone can join the forum and read the posts - how else do you think we form a group  in the first place? You can read even without joining, you just can't post a reply, to do that you have to create an account and every so often people do just that from all over the world to post spam and advertising. The site is very closely moderated but there are thousands of posts per day as there are dozens and dozens of forums so it may take a bit of time unless you report it.

    At the bottom of the reply box is a reminder that anything posted is publicly visible and not to include anything you don't want the world to see - for example, never include addresses or specific names that aren't already in the public domain. If you add your email address the post will be held back for moderation automatically. The only bit that is private is the private messaging system where the only person who can see it is the person to whom it is addressed.

    I've already reported your other post - someone may have "cloned" your account.

    • carol16456
      carol16456 EileenH

      Posted

      Thankyou Elleen. ,was taken aback yesterday when I got the message .Do not know how to get back into the original,so thankyou for doing it for me Carol .
    • EileenH
      EileenH carol16456

      Posted

      No - it's your second post on here I've reported to the moderator for his information so he knows to watch out for something. I haven't seen the other one - was it a private message?

      If you click on your name on a post it will bring up "your" profile page which also lists all your posts. At the top right you will see 3 silver grey boxes, the middle one has an envelope with messages. If you click on that it will bring it up any messages someone has sent to you.

      All anyone has to do to send a private message to you is click on the envelope next to your public post. You can choose to block posts from that person - but in this case you would be better to click on view and bring it up so you can report it to the moderator as well so they can investigate the source. 

  • old_nanna
    old_nanna carol16456

    Posted

    well good luck with that , its a great idea , wish i could join you lol BUT im in australia lol i would love to have a coffee and chat time about our problems , , keep your chin up , even though im not on any meds now im soo tired and no energy , ,,im trying to boost my imune system thats all i can do , doc says its the poly. thats the cause of the loss of energy , good luck and enjoy 
    • hilary_76724
      hilary_76724 old_nanna

      Posted

      Where are you in Oz? I lived in Sydney for a while 9 years ago and loved it. The only reason I came home was my aged mum who then died shortly after my return to the UK. If I ever get this bl***y condition under control enough to do the horrendous flight, I'll be back to see friends for a holiday.  Interestingly, one of my best friends is a reconstructive plastic surgeon at the Sydney Melanoma Unit and he's useful for researching medical questions I have, although not being his field, I find the advice on here much more constructive.
    • EileenH
      EileenH hilary_76724

      Posted

      I flew to Oz with PMR - PMR without pred even! We stopped over in HK on the way for 2 nights (which allowed our lost luggage to catch up with us, both lots left on the tarmac at Newcastle, not even Heathrow!) and it was OK. I got up evey so often to wriggle!

      I've also flown to S Korea with PMR on pred - I slept for 14 hours when we arrived and dozed on the train for the rest of the second day and after the next night's sleep was fine for the rest of the trip. I'm off to China this summer. No need to be jealous by the way - mostly thanks to an international science meeting that I and him indoors do the editing for the Proceedings. We definitely earn the trip!

    • hilary_76724
      hilary_76724 EileenH

      Posted

      Sounds brilliant all your travelling. The flight to Oz is a tough one but more so if you are 6ft like me. In the past I have gone business class with flat beds but now I'm retired and have to pay for myself I think the price might be prohibitive. I love Hong Kong too. I lived there as well back when it was British. A stopover there sounds a good idea for a trip down memory lane. My next trip is Madrid on 19th April for my honeymoon. My Fiancé is Spanish although he has lived here since he was 5  we will be meeting all his family, the matriarch of which is his 85 year old aunt. From the sound of it she's fitter than me right now!!!
    • EileenH
      EileenH hilary_76724

      Posted

      Ah yes - I am a whole 5'1" in my socks but pred cuddliness made cattle class far less appealing but they won't pay for fancy seating! The trip to Korea was good - flew Munich-Helsinki and then over the top to Seoul. Finn Air seems to have disappeared though. Coming back from Oz we stopped in Singapore - that was superb! Hotel was particularly good - recommended by the agent at Trailfinders, she said we love it and we did! Breakfast from 6 or 7 different styles of cuisine, no need for  lunch! Pool where they laid your towels out for you and brought complimentary watermelon, pineapple etc round on trays - bit better than Travelodge lol My niece is in HK at present and we had considered visiting on the way but we fly to Beijing all arranged with the tour that we're doing before the meeting - it very conveniently finishes in Shanghai the morning of the day before the meeting starts so we then take a return flight to Wuhan and back to fly back to Munich. I hate to think how long the flight is...

      I have no objection to adding on a holiday when we're somewhere for business cool

    • old_nanna
      old_nanna hilary_76724

      Posted

      hi there , its a bit early to get my joints working lol painful joints , im not sure if its ,,what im eating , building up the uric acid . or , still the after affects of the polymialgia , or just old age , but im determined to NOT go back on prednisone , lol ,, im in queensland , in  town called Maryborough , , old town and old people , lol im not really an old mary,ite , and cant understand how the oldies here dont change stuff , lol anyway i dont really know where i can say i really come from , born in brisbane ,then aspley , ,tthen redcliffe , but growing up there and moving around i have traveled all over australa , so i dont think i will stay here either , looking at nursing homes for the future ,might take me back to near redcliffe ,mango hill , lovely area and handy for family to visit lol no im not beig morbid , lol its just Me , and i hate losing my indipendance too , i really cant believe there are so may peope suffering so much with this complaint to , and when did it start , seems its something that i woud like to find out , when i got it it was a new  dsease that nothing was known much about  then it seems its very were , is it the pastics we use , the mycrowaves , or maybe the poisons sprayed on our food , ,,, getting back to where i come from , my dad came out from england with his dad mum sister and brothers in 1910, he was 10 , came from woolwich ,kent , lots of history , have a crest ,  , my cousins have returned to visit and holidays , not me

       , still have relatives there some place , anyway im rambling on lol must go , hope everyone gets some relief from pain x 

  • jennissw
    jennissw carol16456

    Posted

    Hi carole...not sure about your message but just to say I live in hertfordshire. You can PM me 
  • jennissw
    jennissw carol16456

    Posted

    PSyou can find an old post of yours by clicking into your account and lists of posts you are following
  • Emis_Moderator
    Emis_Moderator carol16456

    Posted

    Hi Carol,

    Where did you receive the message - was it via the Private Message (PM) service? If you receive a PM that is from anyone "dodgy" like this there is a Report link in the message to let me know. I can then check the account and delete them if required. No-one on here can get your email details - you may have received an email from us notifying you that you had a PM but this does not mean the user has access to your email. If you still have the message click the "Messages" link at the top right of the site and then click "View". There will be a "Report" flag at the bottom right of the message to send me the user details. You can also block any users from sending you PMs. There is a link below with more info on all of this. If you do not still have the message I should be able to ask the developers to retrieve it so I can check the user. 

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    Unfortunately we do get users who sign up but only use the PM service to try and sell etc but the only way I can do anything about it is if users report these to me. 

    Also, I'm not sure what you mean by two different headers with your name? If you mean that when you click on your name there are (now) 3 groups this is because you have either posted in these groups or followed them. You can leave any group at any time by going to https://patient.info/forums/me/groups and clicking Leave group.

    If you (or anyone else) need any more advice you can PM me at any time or there is an FAQ section linked at the bottom of every page in the forums.

    Regards,

    Alan 

    • carol16456
      carol16456 Emis_Moderator

      Posted

      Sorry to get bother you but is there an quicker way to get into my account? I always go into it via The patient.info app . Trawl through ailments until I get to the PMR bit . Then I whip through the item until I get to PMRGCAuk and click on that .Would be grateful if there is a more direct way . Am out later but would be gratefull for any help Carol
    • EileenH
      EileenH carol16456

      Posted

      Do you not have email notifications? I just work from my emails, straight to the post. Not knowing how the app works - Is there not a search box on the front page of the app - type in polymyalgia rheumatica, or is there not a box with "My discussions" which will take you to a list of the forums you participate in.
    • carol16456
      carol16456 EileenH

      Posted

      I do have email notification and often work back from them ,but as for the Patient web site I can only. Find a way in after trawling through lists and then PMG info and at the bottom of several pages get into it that way .I know it's me being thick but sure there must be an easier way
    • EileenH
      EileenH carol16456

      Posted

      When you get the homepage up, you have a choice:

      Look at either the top right corner or just below the main picture and in either position you will find a box with "Search patient.info". If you type "polymyalgia rheumatica forums group" in either of them that will bring up a list of options, the top one of which should have a green blob against it and is a direct link to the forum from page which has all the threads listed on it.

      Or you can click on Forums on the dark part of the green banner at the top of the page and either use the search box or (when I did it at least) you can scroll down the page and there is an alphabetical list of Popular Groups, Polymyalgia is the 10th, click on that and it takes you there.

      Both a bit quicker than what you are doing at the moment - not being thick at all. I've been through 2 revamps of this site and had a lot of practice trying to find things!

       

    • carol16456
      carol16456 EileenH

      Posted

      Success thankyou ,after a long trawl through found the site I got message from and reported it to the moderator .Thanks once again for you help
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