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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.

     

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Forums

  1. Multiple Sclerosis Discussion & Information

    1. General Discussion about MS

      Questions, support and general talk about MS.

      5,937 topics
      59,650 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.

      78 topics
      329 posts
  2. Friendship & Fun

    1. The Lounge

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

      1,655 topics
      14,496 posts
    2. Jokes & Games

      Share your jokes, games, quizzes and riddles here.

      1,143 topics
      5,990 posts
  3. Forum Info and Help

    1. 84 topics
      135 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
      • 7 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

    • Stumbler
      @Donaya , I probably "stomped" a few years before you got round to your "stomping"!     Take care  
    • Donaya
      @Stumbler Small world, Ilford was my stomping ground given i lived there for 25 years!  Enjoy the day :@)
    • Stumbler
      @Donaya . You're up in Essex. That used to be my old "stomping ground". I got out of London as far as Ilford, until I cut the London ties and moved down to the South Coast.  
    • Donaya
      @Stumbler Stumbler! Good name, I guess my name would be Dory from the film Finding Nemo... atrocious memory at times oh and a hand that likes to be independent!    Most certainly people with MS must be their own advocates and not stop until they have the outcome they are entitled to.  If we do not make a fuss it will continue, from my experience the DWP assessors not only aim to fit your responses to their tick boxes, they have the audacity to make assumptions based on the person they see before them not by what is reported to themin terms of difficulties and the impact on day to day functioning. For example i do not fit physical characteristics of what one may visually perceive as disabled. However it is the disabling symptoms that cannot be seen that cause me the most difficulties, unfortunately such symptoms do not fit the DWP framwork of assessment.    As evidenced in reserach the majority of PIP Tribunals are upheld.  What is needed is competent and knowledgeable professionals who understand MS in its entirety, along with the varied disabling symptoms we experience that have a unique cluster for us all.    The joys!   
    • Stumbler
      @Donaya , thanks for sharing this with us.   You're right, the more success stories are posted on the internet generally, the more people will be encouraged.  And we can build up a critical mass mass, which will hopefully start to educate the DWP and the Assessors.   We can but hope.  
    • Donaya
      Hi all, if you were refused PIP by DWP and have not appealed i urge you to do so as MS is a life changing disease.  I applied June 2019 then appealed, last year Oct following my face to face assessment Sept. This was refused, i then appealed by Tribunal which took place July 2020 via telephone. A Doctor, Judge and a representative from DWP asked questions based on the what was reported up until the date of assessment (sept 2019) they did not want to hear about now.  Anyway, this was not a scary experience. In fact it was easier than the DWP assessment, they wanted to hear how the RRMS impacts on my day to day life.  The decision was upheld and i was awared PIP standard rate.  4x 2 points awared and 4 points awared fot mobility.  Interestingly DWP scored me ZERO in all areas!!! I will be back dated from june 2019 and entitled to PIP until june 2022.    Be brave, fear nothing and make sure you stand up for MS by claming what you are entitled to. Do not be put off by a Tribunal. My opinion is DWP have no idea what they are assessing with MS, lack understanding to the hidden yet highly self limiting symptoms that do not fit nicely into their generalised tick box questions. DWP are likely to score people with ZERO like me, dont be put off... appeal with a smile! Surely living with MS is far harder than anything a Tribunal can throw at you. Good luck all. 
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  • The forum's lifetime

    • This forum was born on
      16 Jul 2004, 10:20 pm
    • and has been going for
      16 years and 27 days

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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