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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!

     

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

     

    We’re a friendly community where you can also chat about everyday non-MS things, have fun with jokes, discuss your hobbies, share things like music movies, make friends and more. Members also have some additional features that aren’t available when not logged in.

     

Forums

  1. Multiple Sclerosis Discussion & Information

    1. General Discussion about MS

      Questions, support and general talk about MS.

      5,874 topics
      59,214 posts
    2. A Survivor's Guide to Multiple Sclerosis

      How MS feels and other topics of interest. Replies only

      24 topics
      372 posts
    3. Latest MS News

      News & research articles from various sources via RSS. Read Only

      717 topics
      717 posts
    4. MS Medical Research, Surveys, Projects and Studies

      Please see the Rules in the section before posting.

      71 topics
      321 posts
  2. Friendship & Fun

    1. The Lounge

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

      1,648 topics
      14,450 posts
    2. Jokes & Games

      Share your jokes, games, quizzes and riddles here.

      1,141 topics
      5,988 posts
  3. Forum Info and Help

    1. 83 topics
      134 posts
    2. How To's

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

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

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

      81 topics
      741 posts
  • 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
      • 63 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

    • derby42
      Hi Marina, I know what you mean, I keep finding myself on the sheet in the morning cos I'm slipping off my pillow! Maybe thats not helping either. My ms nurse told me to increase my Pregabin but if I do I get a bit light headed and altogether feel a bit out of it. Maybe if I try it and it helps then Ill have a better idea of whats causing it. 
    • Marina
      It does sound like it might be MS related neuropathic pain. The problem with neuropathic pain is that it can come in so many shapes and forms... Looking back through various topics here, it seems like quite a few people have (had) various types of arm pain.   Are you on any meds for neuropathic pain; or, if you are, are they not helping at all?   When you use the bannister, do you find you're straining your neck due to putting a lot of pressure on your arms? I'm just wondering if maybe there's a cause other than neuropathic pain, such as might be caused by a strained neck, for instance, in which case maybe a physio might know more about it.   It can be a bugger, sometimes, trying to figure out if a pain is neuropathic or musculoskeletal due to a change of posture or weakness, etc  
    • Shirl
      Hello @Thinker17 and to this board.   As Stumbler & Nick have already indicated, being diagnosed with MS is rarely a simple journey and it will affect your emotions.   It is relatively easy for those of us further on our own MS paths but our common advice would seem to be Don't Panic. As it says below my signature, learning to take each day as it comes is your priority.   Before you see your GP, here's something to occupy you. Write a list of all your symptoms so far. Write a second list of your fears/questions. And have someone with you who can make notes about your doctor's comments/actions. You will be listening and reacting to your GP. So trying to remember it all at the same time is too much for the best of us.   Once you have written your lists, lay them aside and relax. Music, TV drama or documentaries, reading (not about MS) and just enjoying each day, are actually the most important things ever!    I am glad your googling led you here but I suggest, for now, you only explore the Resources on this site as they come from trusted sites and experts. It's unrealistic to say Don't Research because that is a normal reaction but you've already   and yet you are clearly panicking about the, so far, unknown. Pack your worries away on those lists.   Keep in touch. We are a supportive bunch and we care about others experiencing anything that may or may not be MS. You are definitely in Limboland and the only passport out of there is Truth and that might take time.    
    • Nick
      Hi there,   Firstly , welcome to the forum,   The worry can be frightening but it sounds like you may be getting a little ahead of yourself.  Good news that you have an appointment arranged, this should start a series of investigations as to what is actually wrong.   MS does have a small genetic factor but is, in itself, a wide ranging condition which affects each of us very differently. It is not an automatic sentence to severe disability and may have a very gradual progressive nature.  It's far to early to start worrying about which type of MS (if that's what it is) this could be.  I was diagnosed at the age of 53 and have SPMS, I am now coming up for 64 and while, it has made a big difference to my life, it in no way feels like any kind of death sentence,   My advice would be to concentrate on what the doctors tell you, take it one step at a time and try, try try to de-stress, difficult I know but that factor alone is important,   Nick           
    • Stumbler
      @Thinker17 , I can understand your concern. We just expect our bodies to act normally and when they don't........   Dr. Google is never a good medic to consult. You shouldn't try to self-diagnose and, similarly, we won't either. What I would say is that your "symptoms" do present in MS, but they do also present in a myriad of other conditions, from a simple vitamin deficiency onwards.   Your GP is the first port of call. So, until Monday, just rest up and take it easy. Lighten up on the exercise and stop catastrophising, it really doesn't help whatsoever. In fact, it can, and does, make things worse.  
    • Thinker17
      Oh, also I’m male and turned 44 in Late December. 
    • Thinker17
      Hi there. I’m from the USA. So right now I am scared and so is my wife. Here’s my story.    For the last three years, I’ve noticed that my memory isn’t great (although the change is very mild). My balance didn’t seem to be what it used to be either (although that too was mild, and I was lifting heavy weights and running with no problem).   Around Dec 22, 2018, I got a weird headache in my left temple— three mild pulses every half hour or so. The left side of my face went slightly numb. A day later, the numbness subsided and I got mild lightheaded was and felt off balance. No one could see me walking different or anything but I could feel it and knew it wasn’t right. This lasted three weeks straight, with occasional tingling in my right foot and right hand.   This past Tuesday Jan 14,2019, the dizziness ended. Then my right hand and right foot started getting tingling, itching, and patches of slight numbness. The left side of my face also became slightly numb once again (although barely perceptible.) the tingling and itching moved up and down my right leg, and reappeared in my right hand, never staying in any one place. Then the tingling moved to my left hand and my right is fine. Yesterday and today I have had very mild but perceptible muscle twitches in my right leg. I think my right leg feels a little more tired than my left, although I am not sure if I’m imagining it. I can still do single legged squats and so forth with my right leg and as of today I am walking fine, although every day my right leg seems to have some new symptom/involvement. My left leg muscles may now also be twitching.    So I did a TON of googling and I really can’t find anything that fits these symptoms except MS. Other things replicate some but not all of the symptoms.  It seems like at my age it would probably be PPMS too. My grandmother on my mom’s side had severe PPMS, was confined to a wheelchair, then bed, lost the use of her arms, lost the ability to speak, and died.    I have an appointment with my GP Monday. I have always been a brave man but honestly right now I am really scared. My wife is also terrified. I know I am jumping the gun but I can’t seem to help it. MS scared me so much. 
    • derby42
      Hi, the pain isnt like the last time Marina, that was more of a dead arm as I recall this is a weakness that causes pain when I use them. Either one or both. My arms feel tight.  do have 2 bannisters John but it was rather painful that night in particular.  I have to use my arms to get to bed as my stairlift only goes from ground to middle floor and I sleep on top. Ive arranged for an assessment of a lift that goes all the way up.
  • Latest Mood Updates

    • Karibou
      Karibou is now Pensive
    • Eastendgirl
      Eastendgirl is now Stressed
    • Marina
      Marina is now Tired
  • The forum's lifetime

    • This forum was born on
      16 Jul 2004, 10:20 pm
    • and has been going for
      14 years and 6 months

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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