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

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  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Thanks Marc. I notice it more in the evenings when I'm resting. Can't say it's limited to my finger tips though. Hopefully short lived like yours... Lolly x
  • Marc%s's Photo
    Marc received a "Like".
  • Marc%s's Photo
    Marc replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    LollyW, on , said: Hey, just a quick one. Does anyone get pain in their hands? Almost like painful twinges or sharp pains mainly in my fingers. Just started a few days ago. Thanks. Lolly x Yes Lolly, I get this, usually in the tips of my fingers. doesn't last long though. My physio calls it ne...
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Hey, just a quick one. Does anyone get pain in their hands? Almost like painful twinges or sharp pains mainly in my fingers. Just started a few days ago. Thanks. Lolly x
  • Marc%s's Photo
    Marc received a "Like".
  • cazza%s's Photo
    cazza received a "Like".
  • Mal%s's Photo
    Mal received a "Like".
  • Softsqueezy%s's Photo
    Softsqueezy replied to the topic "The Jukebox" in The Lounge.
    Nothing lifts me like rock music..by the look of it I'm not alone..there's a fair few rockers on here!! ; ) https://www.youtube.com/watch?v=PiZHNw1MtzI&feature=share
  • Softsqueezy%s's Photo
    Softsqueezy replied to the topic "The Jukebox" in The Lounge.
    Mal, on , said: Might of posted this before , but who cares :) You can never post this song too many times!! I have it twice on my facebook oh yess!!
  • Mal%s's Photo
    Mal received a "Like".
  • LollyW%s's Photo
    LollyW received a "Like".
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Morning, Thank you for the messages. I honestly really appreciate your responses. It helps put things in perspective from someone who's been there. My GP suggested halving my Gabapentin and introducing the Duloxetine as my burning sensations have flared up again. She said if it's the stress a...
  • Scully%s's Photo
    Scully replied to the topic "Near me" in The Lounge.
    Welcome George, I'm just about as far away as I can be from you, down in the Deep South...although I have sailed into Scarborough a few times... Couldn't stay long there as the tidal fall is immense! Definitely get in touch with your local MS group, your MS Nurse can also point you in the right...
  • Scully%s's Photo
    Scully replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Hello Lolly, A lot of us have been though this...the neuro team can be reluctant to pin any sort of 'label' on us if we don't meet the 'criteria' for MS. It's called the 'Macdonald Criteria for MS' which the neuros all adhere to.. Just because you don't meet the strict criteria, it doesn't mean...
  • Nick%s's Photo
    Nick received a "Like".
  • Clairlee1975%s's Photo
    Clairlee1975 registered as a new member.
  • Nick%s's Photo
    Nick replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    No, I would suggest that nothing is ruled out. That is not to say that all your investigations are proving negative . Clearly they are closing in on finding out what's wrong. Its really difficult for you now, but as I said before, it looks to me as if lots is going on to help. I think its difficu...
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Does this rule out MS altogether? Lolly x
  • Marc%s's Photo
    Marc replied to the topic "Near me" in The Lounge.
    Welcome George. Unfortunately, I live in Bedfordshire so I'm not much use to you. Shame as I love a good meet up. Good luck with the socialising though, always good to be able to get together with people with similar experiences.
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Thank you for all the supportive messages :-) So my LP is clear, my evoked potentials are normal and my bloods are squeaky clean. I'm really glad, don't get me wrong, but I'm beginning to think I'm going crazy. I have to have another MRI, just on the lumbar section of my spine. Then a repeat b...
  • Nick%s's Photo
    Nick replied to the topic "Near me" in The Lounge.
    Hi George, I'm sure there are a few people here from your area. It's a great Idea to get in touch with other people in the same position. It was something I managed to do and it was really helpful. I live in Norfolk so can't be much help that way, but would suggest you get in contact with the l...
  • Garfield%s's Photo
    Garfield registered as a new member.
  • George_Allen12%s's Photo
    George_Allen12 started a new topic "Near me" in The Lounge.
    I live in scaborough and I've recently been diagnosed with relapsing and remitting MS.. Just seeing If anyone on this forum is from north yorkshire or around Yorkshire would love to meet up and not feel alone
    • Marc
      Welcome George. Unfortunately, I live in Bedfordshire so I'm not much use to you. Shame as I love a good meet up. Good luck with the socialising though, always good to be able to get together with people with similar experiences.
    • Scully
      Welcome George,
      I'm just about as far away as I can be from you, down in the Deep South...although I have sailed into Scarborough a few times...
      Couldn't stay long there as the tidal fall is immense!

      Definitely get in touch with your local MS group, your MS Nurse can also point you in the right direction as well as using the loins that Nick sent you. These groups have lots of activities, coffee mornings, days out etc. Also some arrange local physio activities, with tea and cake after!

      Scully
  • George_Allen12%s's Photo
    George_Allen12 registered as a new member.
  • kalifed%s's Photo
    kalifed registered as a new member.
  • Nindancer%s's Photo
    Nindancer received a "Like".
  • Skippysprite%s's Photo
    Skippysprite received a "Like".
  • Nindancer%s's Photo
    Nindancer replied to the topic "The dreaded MS 'Hug' attacks again....and again.." in General Discussion about MS.
    Truthfully, I think I've been really lucky, I had problems with the hug about a year after I was Dx . Like I said, lucky - in that it didn't ever interrupt any serious occasions, it happened when I laughed hard. In addition to the squeeze, my bladder suffered but fortunately never caused an accid...
  • magna%s's Photo
    magna replied to the topic "Torticollis ms related?" in General Discussion about MS.
    I'm sorry you are suffering so much x I'm hoping my neurologist gets back to me Monday x
  • Marina%s's Photo
    Marina replied to the topic "Torticollis ms related?" in General Discussion about MS.
    Yes, I have it too! I woke up one day, 18 months ago, with a very painful stiff neck. I couldn't turn or bend my head to the right without it being incredibly painful. Being used to all sorts of MS and non-MS related pain (the latter mostly due to lumbar spine conditions I have) as well as having...
  • Marc%s's Photo
    Marc replied to the topic "Experiences of a Newbie Wheelchair User" in General Discussion about MS.
    Thanks John, that looks interesting.
  • Stumbler%s's Photo
    Stumbler replied to the topic "Experiences of a Newbie Wheelchair User" in General Discussion about MS.
    Would "Access to Work" be an option for you? https://www.gov.uk/government/publications/access-to-work-factsheet/access-to-work-factsheet-for-customers
  • Marc%s's Photo
    Marc replied to the topic "Experiences of a Newbie Wheelchair User" in General Discussion about MS.
    Well that didn't go as well as I'd hoped. Turns out that what I need isn't what I'm entitled to. All they can offer me is he equivalent of what I've already got. What I need is only available to those who are "wheelchair dependant" Little bit short sighted if you ask me. If what I need keeps me...
  • magna%s's Photo
    magna started a new topic "Torticollis ms related?" in General Discussion about MS.
    Good morning It's been so long since I've visited this page and such a lot has happened in my life. So thank you for reading my post and hi to everyone who knows me. I woke up Wednesday morning absolutely fine. I got my daughter out of bed and we sat watching cartoons then suddenly I got extruc...
    • Marina
      Yes, I have it too! I woke up one day, 18 months ago, with a very painful stiff neck. I couldn't turn or bend my head to the right without it being incredibly painful. Being used to all sorts of MS and non-MS related pain (the latter mostly due to lumbar spine conditions I have) as well as having cervical spondylitis, I thought I'd sit it out and wait for it to go or see how it developed.

      After a week, it wasn't that much better, so I took myself off to physio - I often find a physio will know better than doctors about these sort of things. They told me it was torticollis. A month later, I still had it even if it wasn't as bad as at first, but now my shoulder had become painful too. The physio said the torticollis had created a tendonitis in my shoulder. I stopped physio as it wasn't really helping.

      My case might be different to yours, and I hope it is as I still have a painful neck and shoulder to this day, 18 months later. The first week was the worst, then it was still bad for a month or two, then it very gradually got to where it is today. It's not as painful as it originally was, but it still hurts to turn or bend my head; and the pain in my shoulder is still there, going down my upper arm. Some days, I hardly feel it, and on the other days it's a bit more painful than usual.

      It never occurred to me that it might be related to MS though. I wasn't given any painkillers, so I wouldn't know if they might help or not. Baclofen, which I've been on for years and is also a muscle relaxant, didn't help either.
    • magna
      I'm sorry you are suffering so much x I'm hoping my neurologist gets back to me Monday x
  • Scully%s's Photo
    Scully received a "Like".
  • Skippysprite%s's Photo
    Skippysprite replied to the topic "The dreaded MS 'Hug' attacks again....and again.." in General Discussion about MS.
    Hi Scully You have my sympathy, cannot believe someone gave this the name 'hug'........IMO it should be called 'the thug' Hope you feel better after some decent sleep and have time to de-stress. Pam x
  • Nick%s's Photo
    Nick received a "Like".
  • Nick%s's Photo
    Nick replied to the topic "The dreaded MS 'Hug' attacks again....and again.." in General Discussion about MS.
    Definitely stress related, yet you just proved you could still do what you used too...........only not quite so much....as you thought. The business of the 'hug' was not something I really thought I had experienced but curiously, long before my diagnoses, I can recall on more than one occasion h...
  • Scully%s's Photo
    Scully received a "Like".
  • Scully%s's Photo
    Scully started a new topic "The dreaded MS 'Hug' attacks again....and again.." in General Discussion about MS.
    Hello lovely people, Well, I've been under some strain lately. Holed up in my study, checking the law, drafting and re drafting statements, gathering evidence, researching, and finally, making up several court bundles... Then the court case itself. I love representing, particularly when the 'oth...
    • Skippysprite
      Hi Scully

      You have my sympathy, cannot believe someone gave this the name 'hug'........IMO it should be called 'the thug'

      Hope you feel better after some decent sleep and have time to de-stress.

      Pam x
    • Nindancer
      Truthfully, I think I've been really lucky, I had problems with the hug about a year after I was Dx . Like I said, lucky - in that it didn't ever interrupt any serious occasions, it happened when I laughed hard. In addition to the squeeze, my bladder suffered but fortunately never caused an accident but did mean I probably looked like I was choking as I'd get up and leave the room with not a word and hugging my own torso.
      Most unlucky occasion was in a pub and my sister's boyfriend made me laugh so hard, that I managed to throw up a mouthful of wine - extremely embarrassing! It was sick tho, not just wine so my shoes needed a good clean as they smelt horrid.
      I hope it passes for you too as it's rotten, extra stress is just never needed
      Sonia x
  • Scully%s's Photo
    Scully replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Hello Lolly, I agree with Nick, inasmuch as your team are clearly wanting to get to the root of the problems for you. Not much consolation I know when you feel you are perhaps no further forward with it all, but as we all said I think at the start. It can be a case of ruling absolutely everythi...
  • Nick%s's Photo
    Nick received a "Like".
  • Nick%s's Photo
    Nick replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Hi Lolly, Frustrating yes, but also positive. Your Neurologist sounds as if he is doing a great job in trying to get to the bottom of your problems. All this investigation is what it sometimes takes to get something more definite. My own diagnoses was actually pretty quick with the LP giving...
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Has anyone else had a negative LP?
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Ok so no diagnosis but this is what I do know so far... Lumbar puncture came back clear which is a positive thing. He said as there is not enough evidence to diagnose MS they need to rule out other conditions. Just had bloods for Sarcoidosis and Sjogren's Syndrome. He said he's not convinced...
  • Marrow%s's Photo
    Marrow registered as a new member.
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Well done on your court case Scully! Glad it went well but sorry to hear you're not feeling great. On a positive, I've not had my burning sensations for best part of a month, maybe that's the Gabapentin. However they've flared up these last couple of days. I'm thinking it's the anxiety I'm expe...
  • Nindancer%s's Photo
    Nindancer received a "Like".
  • Nindancer%s's Photo
    Nindancer received a "Like".
  • Skippysprite%s's Photo
    Skippysprite received a "Like".


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