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The MS PEOPLE UK Forum
Support, help, advice and information for Multiple Sclerosis. Ask questions and share experiences with people affected by MS.
  • Welcome to MS People UK!

    Looking for support about MS? Would you like to help others with MS? Please join our friendly community.

     

Forums

  1. Multiple Sclerosis Discussion & Information

    1. General Discussion about MS

      Questions, support and general talk about MS.

      5,959 topics
      59,783 posts
    2. A Survivor's Guide to Multiple Sclerosis

      How MS feels and other topics of interest. Replies only

      26 topics
      375 posts
    3. MS Medical Research, Surveys, Projects and Studies

      Please see the Rules in the section before posting.

      79 topics
      330 posts
  2. Friendship & Fun

    1. The Lounge

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

      1,659 topics
      14,531 posts
    2. Jokes & Games

      Share your jokes, games, quizzes and riddles here.

      1,144 topics
      5,993 posts
  3. Forum Info and Help

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      134 posts
    2. How To's

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

      23 topics
      24 posts
    3. Help using forum, Feedback, Wish List

      Comments, questions, etc, about the forum and how to use it.

      82 topics
      744 posts
  • Spotlight

    • Taking medicines abroad
      I try and go abroad at least once a year and, in the past, have given little consideration to just how I carry my drugs with me. We always used to take a pill box and set out the meds on a day-by-day schedule. One problem with this is that drugs should be carried in their original packaging. I've never had much of a problem but, more recently, realised I should be paying a bit more attention to the formal ...
      • 8 replies
    • The Mountain Poem
      This poem, originally written for mental health, could also apply to Multiple Sclerosis where fatigue and pain are invisible and helps explain how we may cope with it.
       
      If the mountain seems too big today,
      then climb a hill instead.
      If the morning brings you sadness,
        • Like
      • 1 reply
    • It's never too late...
      I was reading some MS news and I thought: “It's all too late for me.” Then I remembered how HARD I've been working on my negative tendencies and how SUCCESSFUL that has been, so far. MS challenges us every day. For me, it is never too late to work at being positive and to learn a new skill with whatever abilities I have left to use. What positive aims and goals do you have?
        • Love
      • 8 replies
    • 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
      • 102 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
  • Latest Resources

  • Latest Posts in Topics

    • Marina
      Ooh, those “mobile phone type vibrations” are awful and can have a ton of different descriptions given to them! Buzzing, fizzing, bubbling, electric wires shorting, and many more.   I get them, but not due to L’Hermittes. Mine are neuropathic pain, and I have them permanently in my feet and legs to some degree or another, and sometimes in my abdomen when it might also feel as if I’m having palpitations but I’m not.   Pain | MS Trust MSTRUST.ORG.UK Pain   I’m sure you’ll manage just fine with your notes
    • Dinky
      @Marina   Thank you for your advice and the information you shared regarding Lhermitte's sign,  and what questions to ask.   Certainly sounds like what I experience and it’s nice to give it a name rather than trying to explain mobile phone type vibrations to people.. lol   I have a lot of prep to do before my appointment it sounds like, 6 months worth of symptoms and notes to consolidate into a smaller amount of notes so that I don’t miss telling the specialist.   Dinks  
    • Marina
      Hi Dinks and welcome!   This must be feeling like a very uncertain time for you, if not a bit scary...   I’m guessing that the neurologist who ordered the MRIs/ LP and who gave you a DX of MS over the phone was not an MS specialist, which is why you’re now being referred to a specialist - eg, a neuro who’s an MS specialist?   The best thing we’ve found is to make a written list to take with you, with every single symptom you’ve had and when and how often you’ve had them. That way, you can tell the neuro what your symptoms are or have been. And make a separate list of any questions you have.   You’ll want to ask what type of MS you have, and what treatments might be available to you.   The neuro should hopefully put you in touch with an MS nurse, who will thereafter be your first port of call for any future questions or for meds, and who might refer you to physio if needed, etc.   You might also like to take a family member or trusted friend with you, as we sometimes feel a bit nervous on a first visit to a neuro, so that they can help with asking questions and remembering what the neuro said to you.   This page on the MS Trust’s website has some handy tips about “Preparing for your appointments” about half-way down the page, also with some “Example questions to ask”, which you might find of help?   Making the most of appointments | MS Trust MSTRUST.ORG.UK Here are some suggestions on how you can make the most of your appointments with health professionals in your MS team.   The vibrations emanating from your spine sound like it might be “L’Hermitte’s Sign”?   Lhermitte's sign MSTRUST.ORG.UK Lhermitte's sign   Good luck with your appointment, please do let us know how you get on? And feel free to ask any questions you may have!  
    • Dinky
      Hello All   So from February I experienced numbness, balance issues and blurred vision in one eye. As my symptoms progressively got worse I was seen by a Neurologist and sent for Cervical Spine and Brain MRI’s.   Both showed clear of lesions and a Lumber Puncture was arranged, after 6 weeks and chasing results I was told over the phone that my CSF oligoclonal bands are positive for nueroinflammation and was told I have MS and would be referred to a specialist.   I have my appointment booked for Aug 3rd and don’t really know what to expect from it. Any advice would be appreciated and also what questions to ask.   Although many of my symptoms have eased I still have a numb left arm me, I feel a little off balance occasionally still and do get vibrations eminating from my spine when I have done too much. I work in a warehouse/DIY store. I fine fatigue is my biggest battle which is very hard as I have 3 teen sons….   Dinks
    • jayjill
      Yes thanks, Marina. I just hope all the threads come together to make sense of and heal various conditions, including ms. If ways of helping AIDS were found, it must be possible to help with other conditions.
  • The forum's lifetime

    • This forum was born on
      16 Jul 2004, 10:20 pm
    • and has been going for
      17 years and 13 days
  • Latest Mood Updates

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      Dinky is now Thinking
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      Dinky is now Thinking
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      Trace is now Depressed

About Us

Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.

If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.

The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.


The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.
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