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Support, help, advice and information for Multiple Sclerosis. Ask questions and share experiences with people affected by MS.

  • Welcome to MS People UK!


    If you’d like to ask any questions about MS or if you want to share your experiences, please do register.


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  1. Multiple Sclerosis Discussion & Information

    1. General Discussion about MS

      Questions, support and general talk about MS.

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      58,846 posts
    2. A Survivor's Guide to Multiple Sclerosis

      How MS feels and other topics of interest. Replies only

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      News items from recent months related to MS, via RSS. Read Only

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    4. MS Medical Research, Surveys, Projects and Studies

      Please see the Rules in the section before posting.

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  2. Friendship & Fun

    1. The Lounge

      Chat about day-to-day things that are NOT especially MS related.

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    2. Jokes & Games

      Share your jokes, games, quizzes and riddles here.

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  3. Forum Info and Help

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      "How To's" and tips on using the forum. Replies only (where allowed)

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  • Spotlight

    • DLA to PIP
      Well, this morning's post brought the DWP letter I have been expecting for about two years! Yep, you've got it, would I like to apply for PIP as the DLA is ending. I feel like I might be the last person on the planet to get the letter, but probably not! Having sorted out the various requirements needed to make the initial call, and having referred to the members-only guides on the Benefits&Work site ...
        • Like
      • 42 replies
    • Talking to others about your MS
      As some of you know, I have been writing and talking about my MS since I was diagnosed in 2007. One thing I was glad I did back then was tell people that I had MS. This is probably not something anyone should suggest or recommend to others just diagnosed. For myself, it turned out to be a good decision. It's a strange thing, when you tell most people they simply don't understand ...
        • Like
      • 8 replies
    • How We With MS Feel...
      When we say we can't do something because we don't feel well, put yourself in our shoes by using the examples of our symptoms below...
      Painful heavy legs: Apply tightly 20 lb ankle weights and 15 lb thigh weights, then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now? ...
        • Like
      • 21 replies
    • The Spoon Theory
      Christine Miserandino wrote “The Spoon Theory” as a means of trying to describe to her best friend how it feels to be disabled and not as healthy as they are.

      Although “The Spoon Theory” is about Lupus, it can apply to MS or any other such condition just as well.

      You can read it in PDF format here ...
        • Thanks
        • Like
      • 18 replies
    • The requested Gumption
      Gumption’s great! Lots of folk have loads of it, some have none. It’s essential, it’s something money can’t buy and it’s immensely valuable. You don’t just automatically have this stuff. Gumption is like a reservoir. You start off with a little and by playing your cards right you may gain a little bit more. Once you are all topped up with gumption you can tick along quite nicely. ...
        • Like
      • 4 replies
    • Letter To Normals
      Having MS means many things change, and a lot of them are invisible. Unlike AIDS and cancer, most people do not understand even a little about MS and its effects and, of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand... These are the things that I would like you to understand about me before you judge me...
      • 8 replies
  • Latest Resources

  • Latest Posts in Topics

    • Nick
      I'm Bartholomew and I've been boating in Belize 
    • Shirl
      I will never catch up with all the posts in this section since I left - temporarily, as it happens. So I'm bringing back one we did earlier -TEN years ago:   Let's get another game going through the alphabet:   I'm Albert and I've been abseiling in Argentina.   Looking forward to seeing how many activities we can find!    B is next...
    • Shirl
      Hello @Minky Madam & a very warm Whenever I read the experiences of those now in Limboland and those of us who escaped by hook and by crook, I'm painfully reminded I was where you are now when I first joined this forum.   I've recently returned and am glad to join Nick and Marina in all they've said to you. We've all known the frustrations, anxieties and confusion that Neuros unwittingly cause us. When I finally had my dx I felt like throwing a party. I don't know who I would have invited as friends and family had been certain all along so it wasn't new news to them.   And there is always the sceptical viewpoint - "if it isn't MS, what is it, because it isn't my imagination causing all this malaise".   Let those that have been where you are now support you! Nick and Marina have given excellent advice. I would only add that I never attend a medical apointment alone. Always take a good friend or family member if ever your husband is unable to go with you. I write a list of questions and my husband sits with it on his lap. He is able to talk for me when it all gets too much. He always notes down info for me.    And always keep letters and reports - if you need to claim a benefit, supporting evidence is a key requirement. As well as being your own data bank about YOU.
    • Shirl
      Needing the loo throughout the night has to rate as a component of insomnia. Not having the urge must be difficult to manage. I'm concerned you don't have a drink after late afternoon though - it could affect your kidneys. I've lost one of mine (careless of me) through infection and surgery complications.    Being in Limboland is not at all easy. I was left in there until we moved to a city with an excellent urological institute. They have been proactive in my care from the word GO.   The neuro I saw gathered reports from 3 previous hospitals (concurrent - we haven't been flitting around). He was thus able to confirm MS 11 years after a report was written and not shared with me.    Just keep on plugging away ; don't ever settle for being brushed aside, and well done for maintaining a happy mood. Limboland is too crowded so keep leaving it as your aim.
    • Marina
      As long as posts are related to the topic subject, they can stay in the topic. Otherwise, you might prefer start a new topic, and you can always link to this topic if you feel it appropriate
    • Nick
      Shirley,   What a fantastic post! Brilliant........suggest you don't give up writing.  I agree on so many points, trust your specialists,  and a forum where you can have time and space to ask questions.  Like you I am passionate about this forum (Many many thanks to Marina) It's helped me and I hope that some of my contributions have helped others. By the way I too am in the middle of a house move, first in 32 years.......... tough going, but getting there.    Nick
    • Stevietoo
      Limboland in one way, but have been for decades so just dealing with it. If you named the top ten most typical symptoms, I'd be shouting 'house', although lumbar puncture negative (learned a long time ago not to expect huge amounts from doctors). Flare up recently so lost some minor sensation in left arm and leg, double vision, and at the same time, the dumping syndrome got much worse so I couldn't eat without having breathing problems - which, out of the lot, is the nastiest. Back to insomnia from not being able to breathe properly again last night. I am determined to keep myself cheerful though.
    • popsie
      I am unsure if I can reply in one post to several other posts.  Sorry, I have not been on this site  for a long time so please tell me if I am doing the wrong thing.  Re bladder issues I have had no urge for many years and a urologist told me that when this happens the body sends a message via restless legs (which feel identical to spasms, which I have as well, so that's not really helpful!).  So I always watch the clock (especially at night though I do find it difficult to remember one night from another) as I know if I am experiencing spasms or RSL depending on when I last went to the loo, and when in doubt I just try again. I do take Vesicare at night which I do find is helpful. I also try not to drink after 4.30pm.  Re insomnia I learnt to Muscle test (which is easy I can teach anyone who is interested over the internet I use it all the time) and use it to find out how long I slept.  So even though I might have seemed to be up all night with spasms I can ask and find out that I have had at least 4  hours broken sleep which I know is enough for me to feel ok
  • Latest Mood Updates

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  • The forum's lifetime

    • This forum was born on
      16 Jul 2004, 10:20 pm
    • and has been going for
      14 years and 2 months