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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. welshguy49

    Hi folks

    Hi Happymama it's noswaith dda for good evening or bore da for good morning but full marks for trying :-)
  3. Happymama

    Hi folks

    Bore Da, Welshguy!
  4. Happymama

    Cold virus doing the rounds ...

    Yes, and we're testing daily with LF tests from the kid's college. I've had both jabs and had a really nasty reaction to the first AZ - felt awful, temperature etc. This is just a cold though. I've had a flu jab too but that was ages ago and might well have been leftover stuff from last year, it was a long time before this year's mix. One twin has had it and is now better bar being a bit stuffy a week later, one is still getting over theirs and couldn't taste breakfast but it had returned by lunch. One once lost their smell and taste for a week when they were younger. They've all had one jab and the next is to be booked in the next two weeks. It's just because for 18 months we didn't let our immune systems get that bleed-through of minor niggles to practice on. My kids always had a cold after the summer holidays in the October anyway and another after Christmas every year since starting school but none others (which was unusual, most small kids have 5 or 6 a year but mine live with cats, dogs and me not very retentive about cleaning) Shopping trolley handles have a soup of infection and that's where I did get most of my bleed-through from, I suspect plus the kids coming in from a school full of bugs. But it's not quite time to stop cleaning them yet. Covid Delta is a thing, still. Counts round here are dropping, though. I don't get colds, not had one like this since I had H1N1 at the end of 2009. Just a sore throat one time which was seen off by Strepsils Extra, one leaf, in a day, and maybe some red wine. I'm holding my own with the Strepsils. I have an ancient history of tonsillar abscesses, and also sinuses that get so blocked they bleed to relieve the pressure. Both need antibiotics. Both are an AVOID AVOID AVOID situation. They hurt. A lot. Am waiting for my Pfizer topup. DS has had both his now too, and he caught the cold as did the rest of Amazon MME. Freshers in university are dropping like flies, apparently.
  5. Marina

    Cold virus doing the rounds ...

    Sorry you’re feeling like this, @Happymama ! Maybe the article below might explain things a bit? Also, I’ve seen reports that people who’ve had both vaccines for Covid can have the symptoms of an everyday cold if they catch the virus (or no symptoms at all). And Covid seems to be running a bit rampant in schools (maybe not surprising!). “The return of schools and the arrival of autumn means common colds and other respiratory infections are firmly on the rise, spreading coughs and sneezes, more severe illnesses, and prompting some to report their worst colds ever.” ... “Symptoms of Covid-19 can often be similar to symptoms of other illnesses such as the common cold. So it’s important that if a patient does experience symptoms of Covid-19, such as a high temperature, a new continuous cough, or a loss or change to sense of smell or taste that they get a PCR test immediately, and on receiving a positive result, self-isolate for the required period of time.” From: Return of the common cold: infections surge in UK as autumn arrives | Common cold | The Guardian WWW.THEGUARDIAN.COM After 18 months of social distancing, scientists believe people’s immune defences have weakened
  6. Stumbler

    Cold virus doing the rounds ...

    @Happymama , I think it was unavoidable, given Government policy on Covid. Hopefully, if you've been double-jabbed, it will just be like a bad cold and nothing more severe. Get well soon
  7. Happymama

    Cold virus doing the rounds ...

    Anyone else? Am sitting here, my kids have both had this cold and their friend whom we give a lift to college to had it too, and their brother and half of Amazon MME have it too. I have a sore throat and am aching. I'm having to sort the aching from the electric shocks etc, to try work out what's this virus and what's not. None of us have had Covid. I'm sucking Ninja Strepsils every two hours to try slay the sore throat before it gets ingrained. Might have a lemsip before bed. Then I can take Brufen later if I need to. I'm so tired, and have to drive the spawn and their friend to Durham and back all next week. The traffic is horrible, I can use the motorway but it's a lot further and my left ankle doesn't like the clutch on hills any more. Every hill start knocks a bit off and after a week, Friday is very tiring indeed. This week will be purgatory. I'm working on a bottle of good Cotes du Rhone.
  8. Earlier
  9. Stumbler

    Body temperature

    @Jamesmatheson , heat (and cold) sensitivity are known symptoms of MS that can cause issues, so a device to regulate our core body temperature seems like an obvious solution. However, this Forum is specifically for UK Msers, so I'm not sure how we can help with your development in Canada. Although, I wish you well with it.
  10. Jamesmatheson

    Body temperature

    Hello friends I am a student and i believe i have found a treatment i hope we can ask the medical board to allow. I believe that adjusting body temperature will help in treating MS. Just like when a person goes outside when its cold. They forget about what they were thinking and focus on the cold. The reason is their veins get more narrow which stores more oxygen and makes them focus. I am having made a needle that adjusts blood temperature so veins are more narrow and stores more oxygen. The needle also heats up the blood and releases oxygen. It makes a person warm when its cold outside and cold when its warm. Theres no drugs. Its only a needle that heats and cools blood. I only ask for advocates to ask the medical board to allow the device to be used. I promise it will help a lot. Please reply I hope you like what I share James
  11. Marina

    Meds for neuropathic pain

    I can’t take any of those three meds. Gabapentin made me gaga and very dizzy. I put on 6 lbs in a week with Pregabalin, and had other side effects. I can’t take any antidepressants as they affect my adrenalin and I get all sorts of awful side effects. From what I’ve heard, it seems many of our meds have weight gain as a side effect However, I’ve found that Tegretol (Carbamazepine, of the “Retard” type) helps with things like my burning feet and inner vibrations. I was originally given it for TN, which is what it’s normally given for, and discovered by accident that it helped my inner vibrations. I’ve heard other MSers say it helps their other neuropathic pain too. It’s not without side effects as, sadly, no med is. I’ve had a variety of side effects with it over the years which go away when I stop it but which, oddly, don’t always come back when I go back on it! I put on 2 stone in weight several years ago, and a couple of years ago figured it was due to the Tegretol. When I totally stopped it, I lost the weight. I then went back on it a year ago and haven’t really put any weight back on (touch wood!), so now I don’t know what caused the weight increase! Tegretol can also act as a pain killer and can apparently sometimes help with depression. Some people find Clonazepam can help a bit, but I don’t know how it compares to Gabapentin or Pregabalin. It can also help with sleep and is taken at night to prevent the daytime sleepiness it might otherwise cause. I take this too, and it can take the edge off the inner vibrations, etc, when I don’t take the Tegretol. For sleep, I’ve found a good CBD oil helps me to stop ruminating whilst trying to get to sleep; this is as CBD can help with anxiety. It doesn’t help me personally with much else, though, although many MSers find it helps with all sorts.
  12. Just been reading some old threads on here about Gabapentin vs Pregabalin. I've been on Gabapentin for 2 years and have put on a lot of weight, the Gabapentin is also good for helping with sleep and when I've left them off, I've found getting a good night's sleep impossible, leading me to think that I'm already dependent on them. So my GP suggested switching to Pregabalin, however on reading up on them, it seems they are just as bad as Gabapentin for weight gain and becoming dependent. I've tried Amitriptyline in the past for neuropathic pain, but am very sensitive to meds and they just make me feel awful. Does anyone know of anything else I could try, or is it a choice between weight gain or being in pain and not able to sleep?
  13. Eastendgirl

    Question...

    Haha, Walthamstow isn't within the sound of bow bells either! I've now lived in Wales for longer than I ever lived in London.
  14. Stumbler

    Question...

    That's next door to Walford, innit? I don't regard myself as a genuine Eastender as I wasn't born within the sound of Bow Bells! No, that's a genuine cockney, innit? 🤣🤣🤣
  15. Eastendgirl

    Question...

    Lol, Walthamstow!
  16. Stumbler

    Question...

    You're right, @Eastendgirl, MS has various shades of grey as not much is a definite black or white. But, this is like life itself, full of the unpredictable. So, perhaps MS isn't so bad as far as uncertainty is concerned.......😕 So, what part of the East End. I'm Forest Gate born and bred.
  17. Eastendgirl

    Question...

    Thanks for the link @Stumbler I had already read the pages on the MS Society forum. It doesn't really answer the question, but I'm guessing it's because there isn't a definitive answer. There seems to be more questions than answers with MS.
  18. Stumbler

    Question...

    @Eastendgirl , MS is confusing, so don't feel alone in that aspect. The following website may answer some of your questions, but sometimes it isn't black and white :- Relapsing remitting MS WWW.MSSOCIETY.ORG.UK In relapsing remitting MS (RRMS) people have attacks of new and old symptoms, this is called a relapse. Around 85% of people with multiple sclerosis are diagnosed with RRMS...
  19. Eastendgirl

    Question...

    Obviously relapses don’t last for years, so at what point do symptoms of a relapse become classed as residual damage, after a few weeks? Months? Even after being dx for years, still finding it hard getting my head around all the in's and out's of the minefield that is MS.
  20. 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
  21. 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
  22. 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!
  23. 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
  24. 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.
  25. 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’
  26. 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
  27. 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.
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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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