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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. Yesterday
  2. The MS Trust take a closer look to find out more about the research behind the headlines about the potential treatment for Multiple Sclerosis which uses technology similar to two of the Covid-19 vaccines. Researchers develop mRNA vaccine to treat MS-like condition in mice | MS Trust MSTRUST.ORG.UK Researchers develop mRNA vaccine to treat MS-like condition in mice
  3. Last week
  4. Stumbler

    Covid-19 vaccine information

    @Marina , I've been indoors since August 2019, when I came out of hospital following another UTI. My MS suffers from what I call Uri-progression - I'm never the same after a UTI! Going out is now too damned difficult and I just decided that there's nowhere I really want to go! It's not fair on my wife, Colleen, but going out with me just wouldn't be enjoyable - I'd be anxious and stressing and so would colleen, so neither of us would enjoy the experience! Colleen had the vaccine on Saturday. Just to show you how much disarray the NHS is in, her superiors were unable to arrange the jab for her, so she took the initiative and arranged it herself! So, in three week's time, she should have some immunity. But, I agree with your view, that whilst she should be able to manage the virus herself, would she then become contagious.....?? It's not a good time for Colleen, whose been redeployed to the wards this week. There's just a lot of pressure on everybody. Teamwork seems to have gone out of the window and that's before you have to deal with all the numpties!
  5. Marina

    Covid-19 vaccine information

    Only if you catch it, John, and then it’s not a given that it would be a severe case; saying “susceptible” is a bit like saying “might”. Even though I didn’t technically have to shield as I’m not clinically “extremely” vulnerable (merely vulnerable ), I have been shielding since March by choice. The only times I’ve been out is to go to the dentist for a tricky root canal treatment, and no-one comes into the house unless for emergency repairs when all precautions are taken and windows opened, etc. I’m super careful with any deliveries too. I live alone, so it’s a bit of a tough call (especially when your other half is in another country!), it’s just as well I’m used to not going out much due to my MS. Has your wife had the vaccine yet? Although I believe it doesn’t stop transmission as such... It must be a harrowing time for your wife. I know an NHS nurse too and she has to face all sorts of awful things, including anti-vaxxers and covidiots who think the virus is a hoax, etc...
  6. Stumbler

    Covid-19 vaccine information

    Oh 💩! I'm over 60, SPMS, I'm a man, EDSS of 7 AND my wife is an NHS nurse! I'm toast!!!!!!
  7. This is very early days, but might offer some hope for the future? BioNTech Vaccine Treats MS in Mice Without Dampening Immune System MULTIPLESCLEROSISNEWSTODAY.COM BioNTech’s experimental non-inflammatory vaccine — designed to dampen the abnormal immune responses seen in multiple sclerosis (MS) against myelin — delayed the onset and...
  8. Marina

    Covid-19 vaccine information

    This article refers to the Pfizer and Moderna vaccine, and not to the Oxford AstraZeneca one. The coronavirus and MS – updated global advice WWW.MSIF.ORG MSIF's advice has been updated following extensive consultation with MS neurologists and research experts from the MSIF movement. It also says: “The following groups of people with MS are more susceptible to having a severe case of COVID-19: • People with progressive MS • People with MS over the age of 60 • Men with MS • Black people with MS and possibly South Asian people with MS • People with higher levels of disability (for example, an EDSS score of 6 or above, which relates to needing to use a walking stick) • People with MS and obesity, diabetes or diseases of the heart or lungs • People taking certain disease modifying therapies for their MS” I’m SPMS, over 60, and have an EDSS of 6... but due to a possible anaphylactic allergy to penicillin, I may not be able to have any of the RNA vaccines, although the Oxford AstraZeneca one should be OK.
  9. Earlier
  10. Happymama

    Swallowing - odd sensations

    My GP has been very understanding and is finding me a new one. Hard to see them now, with Covid around. I'm happy to wait till we're all inoculated.
  11. Stumbler

    Swallowing - odd sensations

    @Happymama , whilst swallowing issues (Dysphagia) is a symptom of MS, this doesn't exactly fit the description of that symptom. On this basis, I would primarily see your GP to see what they think. I do hope your Neuro hasn't written you off. NICE have provided guidance for standards of care for MS Patients, which might interest you:- Overview | Multiple sclerosis in adults: management | Guidance | NICE WWW.NICE.ORG.UK If you feel your Neuro is falling short, then your Hospital's Patients Advice and Liaison Service (PALS) will be able to assist you.
  12. @Jo-Louise , fear of the unknown is pervasive and can be all consuming, so I understand where you are coming from. We get left to our own devices and head straight for Dr Google. Whilst this may provide potential answers, it can also find all manner of inappropriate stuff, which can scare you witless, so is not recommended. So, using what you've said above, create a short, concise list of all the symptoms that you have experienced. This should be a good justification for your GP to make a referral for you. This list will also be useful when this referral comes through. Whilst one of the possible answers may be MS, you need to be aware that there are some of us, who may be in a bad way. But, we've had MS for a long time. We haven't enjoyed the benefits of the quantum leaps made by medical science over the last couple of decades. So, potential prognoses are a lot more positive now. Once your underlying condition has been properly identified, then a treatment plan can be made, which will include the provision of (correct?) symptom management treatment.
  13. Thank you for your reply. Yes I think a neurologist is my only way forward. Just struggling to come to terms of these changes. I’m 32 with two children so deep down I think I’m screaming out for answers or a magic wand. I don’t think even I know what I’m asking. I think if I new and had the answers I could deal with this as lot better. Ive spent so many nights sat up reading all sorts to try and understand what is happening to me. I drop full cups and dinners etc and my kids look at me as if to say why did you do that!! It’s awful to read through some of the discussions on here, and I don’t want anyone to think bad of me to think this upon myself. But I believe because of the symptoms being very similar to other conditions that maybe someone has been in my situation and could put me at ease even! Thank you again and I hope everyone has a lovely day x
  14. Hi @Jo-Louise , I can understand why you've joined us, you're quite rightly looking for answers. Neurological symptoms can be difficult to be pinned down to a specific cause, as your symptoms can present in various conditions. A Neurologist is best placed to "eliminate the possibles, then investigate the probables". So, see your GP and request a referral to a Neurologist for a second opinion. Please stay in touch and let us know how you get on.
  15. Good evening, so I have decided to sign up and ask for all your advise. I understand only a doctor can diagnose, but I am now thinking I have been Mis-diagnosed. So I have had pins and needles/ painful legs and severe headaches for the last 3 years but I have spent the last year in agony, rapidly getting worse. I have been diagnosed with fibromyalgia although I haven’t seen a consultant of any type. I am under the impression that you have good and bad days with fibromyalgia. I’m in constant agony all the time. Some days I can’t even move out of bed. Im struggling with the pain in my legs and feet it’s like a painful tingle. I get muscle cramps and spasms all over especially in my legs and hands. I get shoots down my arms. My lower back causes pain which comes and goes & Neck pain which causes headaches and pain over my eyebrows which shoot down my right side of face which is agony in my ear and teeth. This pain comes and goes, sometimes on and off all day then not for days/weeks. I get this feeling when I need to sleep I need to sleep! It just comes over and I can’t stop myself. I feel tired all the time. I keep getting this really sharp pain under and around my ribs. I forget everything. Drives my husband insane! And my other concern is when I urinate I have to strain to get it out. Not sure if this is even something to worry about but I get the urge like normal to go toilet but it just won’t come out. Im not sure if I’m over thinking this but I no this is by far the best place to ask. I appreciate any help and advise any one can offer me. Thank you Jo x
  16. Yesterday, in the afternoon, I had an odd feeling in my lower oesophagus and when swallowing, a mild pain and odd feeling. Is this a very strange spasm? Happened at the top a bit too, and at the top is back this evening a bit. Hurts a bit to swallow where the pain is. OK totally this morning and afternoon. Not stopping me eating, or drinking (coffee, herbal tea, wine) but it's uncomfortable. Another new symptom in the last two years. And my neurologist has written me off for not being bad enough to interest him!
  17. Marina

    Covid-19 vaccine information

    Short article with links to UK Gov PDFs on the Pfizer BioNTech and AstraZeneca vaccines, a bit like the data sheets that come in boxes of meds, with lists of ingredients and possible side-effects, etc. Two lots of links, one for the “public” and one for “health care professionals”. Blurb about COVID-19 Vaccines from UK Government – Multiple Sclerosis Research Blog MULTIPLE-SCLEROSIS-RESEARCH.ORG If you want to read about the two approved vaccines in the UK. They have not tested people taking immunomodulatory agents and are covering themselves by saying that they may not work...
  18. @Happymama , it's not easy determining what is MS and what is not MS. And, whether or not you should be concerned. But, over the course of time, you will become more comfortable at untangling that conundrum. The link below should provide some guidance for you. But, if you do have concerns, then contact your MS Nurse and discuss the issue with them :- Managing relapses | MS Trust MSTRUST.ORG.UK A multiple sclerosis relapse is a sudden onset of symptoms that commonly lasts for a number weeks.
  19. Anyone else get these? All other symptoms I've had in the last year have been new ones with old ones not appearing much at all. This might be another one. I get tingles, a bit like buzzing but not quite, across my shoulders and neck. Had it twice recently. Lasts about five minutes. It's not the shivers.
  20. Marina

    Covid-19 vaccine information

    “Who will get the vaccine first, and where do people with MS fit into the priority list?” and other Q+A related to MS: When will people with MS get a Covid-19 vaccine? | MS Trust MSTRUST.ORG.UK When will people with MS get a Covid-19 vaccine?
  21. Stumbler

    Now That's What I Call a Corona Christmas

    Love it, @Marina 🤣🤣🤣
  22. Stumbler

    Fatigue

    @Redpoppy , I do feel for you. I needed a nap at lunchtime, but I am blighted by incontinence, so never get a good night's sleep. We just can't allow ourselves to get stressed by these issues as that's counter-productive as it can cause progression. Just go with the flow. We didn't ask for any of this!
  23. Redpoppy

    Fatigue

    @Stumbler Hello, I stand suitably corrected, but I still believe a bespoke MS fatigue solution Should be available . Yes Adderal is “speed’ like, and believe me, I’m at the stage to not give a hoot about side effects (death being one of them) Just wake me up!! That’s how bad weary I am of my fatigue, (every pun intended) my quality of life is so poor. I can’t remember the last time I got up at 9am and stayed awake until bedtime. I excelled myself two weeks ago and slept 18 hours. I’m perma exhausted and I’ve had enough Got to go sleep
  24. Stumbler

    Fatigue

    @Redpoppy , I share your frustration, having just had a needed nap. But, as you know, Fatigue is just one of a myriad of symptoms which frustrate and annoy us. I think it's unfair to suggest that nothing is being done to resolve Fatigue. There is some 2000+ studies that are, or have been, looking at various aspects of MS. Some of these studies are looking at lifestyle changes, which may have a positive impact on MS Fatigue. Various new drugs are being researched, to avoid the overall functional deterioration associated with MS. This has to take priority over resolving one symptom, although positive improvements in Fatigue may result. Adderall does seem to get used in the US. Personally, the profile of this drug scares me, as the worst potential side-effect is death, with a possibility of addiction. It is unlicensed in the UK and unlikely to be prescribed. There was one study of the use of Adderal in MS, to measure improvements in cognition speed. This study completed in 2015 but no results have been posted. I think I'll stop there before I start waffling. These are just my views, which may or may not placate you. But. like I say, I do share your frustration.
  25. Redpoppy

    Fatigue

    Fatigue research So I got to thinking. Given that MS fatigue is the most complained about symptom, why are more bespoke treatments for MS fatigue not a huge priority? Most MS fatigue treatments are usually originally made for other diseases, ie: Modafinil was originally used to help narcolepsy. I think we deserve a fatigue treatment totally dedicated to MS, (or a defined combination of the best suitable treatments available), it makes sense. My life is ruined by fatigue and, according to statistics, it will become progressively worse. I don’t feel that MS fatigue is taken seriously enough. “I’m utterly exhausted.” Oh that’s a very common symptom of MS, nearly everyone gets it... Why isn’t there more urgent research and/or solutions to such a massive life limiting symptom? Where is my quality of life? Also, on American forums, (using just one example), huge success treating fatigue has been attributed to the combination of Adderall with Modafinil, Adderall is of course is not prescribed in this country for fatigue. I have spoken to lots of people who say their life has been transformed by the combination, and they get up before 9 am and stay awake all day with no sleeping! They feel normal! To my mind, the MS Societies should use their might to collate and evaluate all the different methods for treating fatigue globally, and pass the vital results on to us and our doctors. After all, is knowledge not power? My fatigue is destroying my life and I think the MS Websites should address this crippling affliction more. It’s 2020, why on earth with all the research, donations and medical advancements available in the world am I not awake? It’s a basic but essential right of life to be awake. It seems RIDICULOUS! Yet we are left to suffer and just get on with it? Can we all please rise up and demand bespoke treatment/research for the treatment of MS fatigue specifically? This is no way being taken seriously enough by any of the MS website organisers and it beggars belief that MS related fatigue has no new drugs or any form of possible bespoke treatment soon to be available, even on the horizon. WHY? Do we not count? I beg you, let’s revolt and end the suffering.
  26. Gosport Nancy

    No Longer Seeking a Diagnosis

    @Happymama Hey there. Thanks for the reminder to get back here. I just checked and I was last here on the 3rd July So we have survived the 1st lockdown and am now looking forward to staying indoors over the silly season in December. I've been getting even more forgetful and had to cancel my brain scan due to lockdown. The lady from the radiology department said her department was COVID secure but I doubt the rest of the hospital is. I can no longer walk the whole length of the hospital corridors and can't work out how to social distance in a taxi when so many drivers are refusing to wear face coverings!
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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.


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