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

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  1. Last week
  2. Marina

    Questions to ask Specialist

    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
  3. Dinky

    Questions to ask Specialist

    @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
  4. Earlier
  5. Marina

    Questions to ask Specialist

    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!
  6. 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
  7. jayjill

    Long covid and the immune system

    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.
  8. Marina

    Long covid and the immune system

    I'm guessing this is the news you mean, @jayjill ? Long Covid: rogue antibody discovery raises hope of blood test | Long Covid | The Guardian WWW.THEGUARDIAN.COM Test could be available from GPs within six months, as scientists warn of ‘a lot of damage to a lot of lives’
  9. Marina

    Long covid and the immune system

    @jayjill PS - I’ve split our posts about long covid into a new topic, as it’s not really related to the vaccine
  10. Marina

    Long covid and the immune system

    Long covid is one of the aspects of the virus that I find quite worrying. I was fatigued for at least two years after I had glandular fever (EBV, a possible trigger for MS) when I was 17 and was off school with it for 6 months, as I also had jaundice, appendicitis, pleurisy and a couple of other things with it. I then developed a variety of symptoms after I quite severely had another virus a couple of decades later, and was told at the time it was ME. Whether I have ME as well as MS is unknown as there’s no tests for ME. So, yes, it wouldn’t surprise me if there turns out to be some sort of connection.
  11. Hello everyone......have you heard the news about long covid? The scientists have found a trigger in the immune system which is involved in this reaction. Hmmm, sounds like this is something closely related to the development of ms 🙄 Lets hope they think laterally.
  12. welshguy49

    Hi folks

    Ah okay fair enough Marina I'd not considered what money grabbers Facebook are.
  13. Marina

    Hi folks

    Thanks for the thought, which I appreciate! I don’t think there’s any point in setting up an FB Page or Group. Much as I hate FB, I run a Page and am also admin of a couple of groups, so that side of it isn’t unfamiliar to me. With Pages, what many people don’t realise is that only about 10% of a Pages’s posts are shown in followers’ feeds - unless you pay to "boost" your post (a single post, not all posts), the more you pay, the more people your post is shown to. With Groups, there are already a gazillion MS groups. Either way, whether a Page or a Group, it would need a lot of members or visitors to drive enough people to here, which would mean needing to drive people to the FB Page or Group first. Also, one of the reasons people love FB is that they have all their Pages and Groups on one huge website. If you go to my profile and click on the “About Me” tab, you’ll find a history of how this forum came to be and how it grew into what it became. That was written some years ago and things have since changed due to the likes of FB. Here’s an older topic about the forum becoming quieter and FB:
  14. welshguy49

    Hi folks

    Have you considered setting up a facebook page to direct people here?
  15. Stumbler

    Hi folks

    @welshguy49 , you're just like me. I got involved in Forums after 30 years of symptoms. I thought my experience may prove useful to others too. It was a rewarding few years until the Zuckerberg takeover of cyberspace.
  16. welshguy49

    Hi folks

    Hi Marina when I came across this forum I joined too see if maybe I could contribute. I've had relapsing remitting MS for 20 years but despite the usual battle scars from old relapses I'm very fortunate to be enjoying a long period of remission.
  17. Marina

    Hi folks

    Hi welshyguy49 and welcome from me too. For some time a few years ago, this was quite a busy forum but, as Stumbler has said, people seem to have floated away to places like Facebook. I totally agree with you about FB, and I could go on at very great length about the pros of a “proper” forum like this one versus the cons of an FB group! The forum logs show that people do come and read the forum. It’s just a shame that they don’t sign up and post - so thanks for bringing a bit of life back to us, even if it’s only for a little while As MS (and its symptoms) isn’t something that disappears or becomes transformed into something else over time, I keep the forum going even if only for reference to those who visit and lurk. If you have anything you’d like to ask or say about MS, please feel free to post it in the MS Discussion section. If you’d like to chat about something that’s not about MS as such, then this section is made for that.
  18. welshguy49

    Hi folks

    I hear you but I'm yet to see facebook help anyone with MS and somebody that's newly diagnosed may feel awkward discussing their condition on facebook at least on forums an alias is used.
  19. Stumbler

    Hi folks

    @welshguy49 , unfortunately, it's a sign of the times, with the escalating growth of Social Media, e.g. Facebook, etc.. This seems to offer immediate response, but may not have easier access to connected accumulated information and repositories of facts. We're doing our best to survive in trying times.
  20. welshguy49

    Hi folks

    Thank you for the reply Stumbler I just noticed from some of the thread dates that there doesn't seem to be much activity here.
  21. Stumbler

    Hi folks

    Hi @welshguy49 and welcome to the Forum. It's pretty quiet around the Forum, but we're hoping it might pick up. The few of us that are here will try to ensure that no posts go unanswered. Stay safe.
  22. welshguy49

    Hi folks

    I've just joined this forum so just saying hello :-)
  23. Marina

    Yippee, I have had the Vaccine

    I had my 2nd AstraZeneca jab last week. Having heard that side effects could be worse after the 2nd Pfizer jab but less after the AZ jab, I was expecting to have milder, if any, side effects. Not quite so... Firstly, I had to have the jab in my right arm as I fell over 2 or 3 weeks previously and had badly bruised my left arm, leaving it still bruised, sore and achy. The position of the chair made it a bit awkward for the nurse to reach my right arm. Having not felt the jab the first time, I hoped it would be the same this time, except I most definitely felt it and jumped as a result. That left nice little blood spots all over my shirt. I again felt sleepy on the day, like I did with the 1st jab, but not quite as badly. The next day, my legs deeply ached, with my left leg worse than the right. I only had a very mild headache, barely noticeable. And I generally felt more wiped out than I normally do but I wasn't falling asleep all over the place like after the 1st jab. But, I had something else really weird! Also on the day after the jab, the ball of my left foot progressively began to hurt, so that by the evening the pain made it as good as impossible to walk on it. I had very badly bruised that foot in the fall I had, and suspect I might have bruised/fractured toes/metatarsals, although I didn’t have pain after the first couple of days after the fall unless I touched any of the bruises. Initially, I wondered if I’d somehow done something to my toes when going for the jab (in my slippers!) that my foot should hurt so much. Then I later looked at the sole of my foot to see it was puffy on the ball, which is when I realised the pain was coming from the ball of my foot and not my toes. The next morning, I was on the phone for about an hour (!) and the pain and puffiness magically disappeared after I hung up! I’ve put this down to “muscle and joint pain” as an adverse effect. I couldn’t get to speak to a GP about it, all the surgery could tell me was that they’d passed it on to a GP and that it “had been noted”. My arm is still achy, sore and heavy, albeit a bit better today. So I’ve had to sleep on my back for the past few days as both arms have been too sore to sleep on my side.
  24. Leo1976

    Hgv lisence

    Many thanks Stumbler !,ive tried many ms sites & had no reply @!all ,thanks for yours I really appreciate your thoughts & advice .
  25. Stumbler

    Hgv lisence

    @Leo1976 , this is the best place to start :- Multiple sclerosis and driving - GOV.UK WWW.GOV.UK You must tell DVLA if you have multiple sclerosis - download the correct form to let them know It's not the definitive answer that you require, but definitive answers need full communication. This form will allow the DVLA to seek details of how your MS affects you from your GP and Consultant. Then a decision is taken. The links on the webpage will explain the process. Good luck in getting your life back on track.
  26. Leo1976

    Hgv lisence

    My job is driving hgv’s ,I was diagnosed with probable ms in January after leg & knee probs ,I’ve now been taken off driving & given a temporary menial role as been with company for an age .my question is will I ever drive hgv’s again ? I could @ present drive under section 88 but management refuse ,has anyone else got experience of a situation like this ? ...thanks I’m advance for any answer or advice .....Newby !!
  27. Thanks marina, I'll take a look.
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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.

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