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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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  1. Multiple Sclerosis Discussion & Information

    1. General Discussion about MS

      Questions, support and general talk about MS.

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      59,378 posts
    2. A Survivor's Guide to Multiple Sclerosis

      How MS feels and other topics of interest. Replies only

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    3. 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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    2. How To's

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

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  • 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
    • Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust
      My husband Pete is raising money for the MS Trust. He won’t cut his hair or beard for all of 2019. Then, at the close of the year, Pete will have his hair and beard dyed. The 3 colours he has chosen to wear on his head and facial hair all have meaning: Blue and White for MS Trust, with Tangerine to make the colours used by Pete's favourite football club.
        • Love
      • 33 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
      • 84 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
  • Latest Resources

  • Latest Posts in Topics

    • Stumbler
      Hi @Annie11 ,   Are these migraines helped by the Pizotifen? And is it taken regularly or reactively?   Muscle spasms and cramps are a nuisance, especially at night when sleep is disturbed. Gentle exercise, specifically stretching can help in this respect. Have a look through this webpage and links for suitable exercises, concentrating on stretching:-   Exercise | MS Trust WWW.MSTRUST.ORG.UK These pages look at how being active can help people with MS. As everyone's MS is different, so is their capacity for exercise. Whether you feel able to practice some gentle stretches or...   There is also advice here :-     Leg cramps - NHS WWW.NHS.UK Leg cramps are a common condition where the muscles in the leg suddenly become tight and painful.   Also, a Magnesium supplement may help. This is something that you can try.   It is now some six months after you spent £200 on your Private Neurologist. Has anything come of this other than the prescription for Pizotifen? Bloods were taken, did this assist the Neuro and what were his conclusions or their planned next steps? You may want to discuss this with your GP, to get their view on what you should have expected for your money.......    
    • Annie11
      Hi all   Just to update you.   I Continue to have regular, sometimes severe migraines but the strange leg and arm feeling (like jumping nerves) are back alongside the odd hands spasm. Disturbed sleep, waking up and unable to sleep again for hours and severe calf cramps. (Have had foot and leg cramps before but had one last night when sleeping and still tender tonight, feels like the muscles are still ‘jumping’ a bit. The pain was so bad I jumped out of bed yelling but couldn’t stand, felt dizzy and nauseated (maybe with jumping up fast). Cramp took a while to start easing, I was crying with the pain.   My GP has kept meon the list (3yr, waited one already) to see an NHS neuro. Saw private one in Feb.    Wondering if if anyone else has the above type symptoms? I just feel there is more than chronic severe migraine going on.    Appreciate that I can chat here as think I’m going crazy sometimes.   many thanks   Anne
    • Marina
      Hi @ronyb and welcome from me too    As you've already noted, MS can be notoriously difficult to diagnose, especially when so many symptoms might be due to a different condition. You say you have cervical spondylosis; I take it you know it too can also cause things like numbness and pins and needles in legs, feet, arms, hands, and things like neck ache and headaches? It doesn't specify facial numbness as a potential symptom, but I've heard of others with spondylosis who've had facial numbness.   That said, the facial numbness you describe is something I had once (and some other MSers too), on the right side of my face, in the year leading up to my DX (when I was 49), when it was initially thought to be Bells Palsy but neuros later said it wasn't, so I was left to believe it was due to my MS. In my case, it lasted about 3 months, then went away and only returned once for a much briefer period of just 2 or 3 days and it was much milder.   Low back pain in MS can be due to changes in posture as a result of other MS symptoms or reduced mobility. If possible, an MRI of the lumbar region might help to see if there are any non-MS problems, eg, with discs?   I also have cervical spondylosis, and other lumbar spinal issues (stenosis, disc problems and more). This makes it even more difficult for the specialists to know whether it's my neck/back or MS causing some of my symptoms. In some instances, the back problems can exacerbate my MS symptoms and vice versa, eg, an achy pain in my right thigh. One example that I have right now is intense internal vibrations (like an earthquake!) in my feet, legs and abdomen; and right now, I don't (yet) know if it's due to pressure on a nerve in my back or neck or due to MS "neuropathic pain" as I haven't yet asked my specialists about it. I now have terrible posture due to pain from my back and other pain, so that falls into the secondary type of MS pain due to change of posture.   I can totally understand your not wanting to miss out on your fabulous 50th birthday gift! Might it be an idea to maybe first check with the specialist or doctor who deals with your neck spondylosis? If it is due to your neck, then it wouldn't be an "undiagnosed condition"?
    • Nick
      Hi there and welcome to the forum,   Clearly you are worried about these new symptoms but I feel the main thing you should consider is just how important it is to put to rest some of those fears. The only way to do that is by first going to the doctor. With regard to thoughts on MS. It is sometimes true that diagnosis may take time, however, these days, as greater understanding about MS is gained, diagnosis can often be a short process. However don't worry about specific causes, better to get the process started with a doctor. This can often be frustrating but the advice here would to make notes on just where your problems lie and then condense these into a short list so that the doctor has a clear understanding. You also need to be prepared for waiting times to see specialists and have tests done.  I hope you get some more input here as the forum is pretty quite at the moment, but you are very welcome, lastly I'm sure your holiday plans will be OK but do get your priorities in the right order.   Nick         
    • ronyb
      Hi Thought I'd come here for a bit of advice   I am 49 female and for the last few days have been experiencing numbness in my face - like when a dentist does a filling. My tongue and gums are also numb I have had numbness in the hands for years, possibly due to a compressed nerve in my neck (diagnosed as tennis elbow, then spondylosis via mri, my feet also tingle with strange feelings in my knees   I don't have any pain anywhere apart from occasional lower lumber and mid back pain.  I don't have any double vision, slurred speech. I walk a lot and keep relatively fit   I've done some research hence being here. I know that it generally affects younger people, but can arise in my age group.   I've read that if the problem is MS that it could take months/ years to get a proper diagnosis and that there isn't much treatment available.   Early next year I will be 50 and I am planning a massive long-awaited holiday to America and Canada, however, I am fully aware that if I go to the Drs and they refer me to a neurologist I then can't get travel insurance due to having an 'undiagnosed condition'   I've looked at the medicines available and they seem to prevent flare-ups by 30-50% but most of the treatment is physio, exercise, cognitive therapy etc  (self managed)    I don't know if I have MS, but if I go to the DRs and get a referral - then my 50th birthday gift won't happen    Any advice - have I read the treatments wrong - is there a point going to the Drs at this point -   how long do referrals take   Thanks for your help
    • Shirl
      The monthly photos have been assembled into the usual triptych format. This beard is famous... in Kingswood, largely thanks to Pete's appearances at his MS Trust Awareness and Fundraising table and also because Kingswood Voice has chronicled the story faithfully.   Here's a link to the September Issue... on issuu: https://issuu.com/kings…/…/kingswood_voice_september_2019/26   The link takes you to the exact 2-page spread featuring our local MP and our own @HairyPete VIP but not in the same article.  
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  • The forum's lifetime

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