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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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  3. Marina

    Ms and sleep

    Hi @Jayne and welcome! In addition to Stumbler's link, you might like to take a peek at this older topic: If you find anything that works, please do let us know; I tend to have sleep problems too and am permanently knackered all day long...
  4. Stumbler

    Ms and sleep

    @Jayne , have a read through this and see if it offers any ideas :- Sleep | MS Trust WWW.MSTRUST.ORG.UK Poor sleep is common in people with multiple sclerosis. Addressing the causes can improve energy levels and quality of life. Find out more about sleep in this A-Z entry.
  5. Jayne

    Ms and sleep

    I really don't sleep welp at all so constantly tired. I don't want sleeping tablets does anyone have any ideas, herbal etc. Thanks Jayne
  6. Earlier
  7. Stumbler

    Brabio

    @Catherine , well, Copaxone was always considered best for side-effects, so I'm sure Brabio will be similar. Injection site reactions seem to be the worst problem, but this can be mitigated by discipline rotation of injection sites. The following Copaxone instructions/advice might be useful :- COPAXONE® Injection Instructions & Tips WWW.COPAXONE.COM Recommended depth settings, timing, storage and disposal tips.
  8. Catherine

    Brabio

    Unfortunately I can no longer take other oral DMT's as I have a low lymphocyte count and problems with my liver. The intravenous therapies are something that may be considered in the future, depending on how things go on Brabio. I am doing fairly well so far, twenty years after my first MS episode - so fingers crossed. I wondered if anyone had personal experience of taking Brabio as the list of possible side-effects don't sound too great. But then none of them do really. Catherine
  9. Stumbler

    Brabio

    @Catherine , Brabio is the generic version of Copaxone, one of the initial Disease Modifying Therapies (DMTs). So it's been around for 30 years. Going from Tecfidera to Brabio is a bit of a retrospect move in terms of efficacy. There are now many DMDs, so there may be a better, more effective choice available to you. Have a read through this document for details of these choices :- https://support.mstrust.org.uk/file/DMD-Book-Final-WEB.pdf The following website will also help you choose :- MS Decisions aid | MS Trust WWW.MSTRUST.ORG.UK Filter, compare and select treatments for relapsing MS
  10. Catherine

    Brabio

    Hello, I hope all is well with you all and the new year is treating you kindly so far. Do any of you take Brabio? After three years of taking Tecfidera, I'm about to start taking Brabio instead. I will have injections three times a week and can't say I am looking forward to it. I was taking Avonex before Tecfidera, and had hoped that was the end of injecting for me but sadly here I am again. Any advice would be greatly appreciated. Thank you, Catherine
  11. Marina

    Muscle twitching

    I totally agree with what Stumbler’s said about your GP. I’m also surprised they feel stupidly confident enough to even begin to suggest something as scary as MND. They should keep their wild suspicions to themselves and, instead, refer you to an expert, a neuro, preferably an MS neuro as you’ve already been DX’d with MS. I think we all have different descriptions for the many and various sensations that we MSers get - and, yes, regardless of what your GP says, we do get all sorts of these! When it comes to muscle twitching, in MS there’s something called “myoclonus” which means tiny spasms. It’s (I think?) partly what Stumbler was describing. Myoclonus (Muscle Twtiching) Caused By MS: Types & Treatments WWW.WEBMD.COM Sudden muscle movements can be common and frustrating when you have MS. WebMD tells you why they happen and what treatment might help. When it comes to sensations caused by our faulty nerves rather than actual muscles playing up, it’s what’s called neuropathic pain. Altered sensations | MS Trust WWW.MSTRUST.ORG.UK Altered sensations, such as pins and needles, burning or crawling feelings, numbness or tightness are common in multiple sclerosis. Find out more in this A-Z entry. Pain | MS Trust WWW.MSTRUST.ORG.UK The two main types of pain in multiple sclerosis are nerve (neuropathic) pain and musculoskeletal (nociceptive) pain. Find out more about pain in this A-Z entry.
  12. Stumbler

    Muscle twitching

    @1234icg , twitches are the nerves making the muscles fire indiscriminately and MS is a neurological (affecting the nerves) condition. So, how your GP can say this is not MS-related, but then go on to suggest MND is beyond me. It really isn't helpful when GPs drift into "unfamiliar" territory and start suggesting conditions of which they have limited knowledge. We're not Doctors or medical so we don't suggest anything regarding potential conditions. GP's should work in a similar way, but......... Please disregard suggestions. They only serve to stress you. Something which should be avoided!
  13. 1234icg

    Muscle twitching

    @Stumbler thanks for taking the time to reply!! I wouldn't say these are spasms cos they not painful. They are like little pings going on around the body. Dr frightened me by what he said so naturally concerned now. I have read that people with MS do get muscle twitching but gp said that's not true. Seeing neurologist in a few weeks and dreading the appointment.
  14. 1234icg

    Muscle twitching

    Hi Marina Thanks so much for your reply! With regards to the twitching I get them all over and generally can't see them but feel them!! Dr said it wouldn't be related to MS but could be Mnd which has frightened me so much so that I have spiralled into anxiety, panic and worry. I see Neurologist in two weeks so will see what he says. Dr's have done the basic neurological testing and have said they are good!! Just can't get rid of the fear!! Thanks again
  15. Marina

    Muscle twitching

    Hi @1234icg and welcome! In addition to the good points Stumbler's already made, is your twitching something you can physically see or is it only something you feel? I ask as I have internal vibrations, in my feet and legs and abdomen; these feel like a multitude of miniature twitches but aren't at all visible. Even I, after years of having them, sometimes put my hand on my leg to see if it's something I can feel on my skin or in my muscles, but I never do as these are due to neuropathic pain and not muscle twitches. I can get a twitch just below my eye, which is a mini muscle twitch, it's usually short-lived and doesn't go on for days. If you go to the bottom of this topic page, you'll see a box called "Similar Topics", where there are a couple of topics by other members about twitching.
  16. Stumbler

    Muscle twitching

    @1234icg , a twitch could be a tremor or a spasm, both are MS symptoms :- Tremor | MS Trust WWW.MSTRUST.ORG.UK People with multiple sclerosis may have tremor to some degree. It can range from being a mild problem with coordination (ataxia) to being a disabling symptom of MS. Find... Spasticity and spasms | MS Trust WWW.MSTRUST.ORG.UK Spasticity is a symptom of multiple sclerosis where the muscles feel stiff, heavy and difficult to move. A spasm is a sudden stiffening of a muscle. Find out more about spasticity and... Hope this helps.
  17. 1234icg

    Muscle twitching

    Hi all I have been diagnosed with MS for 18 months (remitting relapsing) and the last five weeks I have had muscle twitching! This has me really worried about motor neurone disease!! Seeing neurologist in 3 weeks!! Seen 4 different drs and they have tried to reassure me but it hasn't!! They all said it would be highly rare. Spoke to ms nurse and also said it would be extremely rare. Does anyone else have twitches. Grateful for any replies
  18. Stumbler

    Just diagnosed with rrms

    Hi @Nix84 and welcome. You're so right about us all being different. Or you could also suggest that we all have different lifestyles. Whose to know what determines the length of that particular piece of string........ For my part, back in the day when I thought I was the only person with MS, I can attribute my three major relapses as down to periods of extreme stress. If I'd known then what I know now, things may have been somewhat different. But, that's hindsight, as useful as fairydust to my MS. So, general rules of thumb - live healthily, eat healthily, exercise moderately and avoid, or manage, stress.
  19. Hi everyone. I had a confirmed diagnosis of rrms on 16/12/19 i am 35 years old and i had my first relapse at 16/17 years old. February 2019 i suffered from optic neuritis which lead to mri and my diagnosis. I know we are all different but can any of u tell me your story of relapses after diagnosis and how often etc. Thank you x
  20. I no longer have to think, "what are you staring at?". It was surprising how often I forgot what I looked like. The year long challenge far exceeded anything we had expected so, once again, a huge THANK YOU for every penny we raised. Although we are not actively promoting the fund now it will, as @Shirl says, remain open until the end of January. We know that some more funding has been pledged this month, so the final total will increase a little. I think I know someone who is pleased to see the end. They no longer have to worry about going into stores with a weird looking bloke (well, not quite as weird!) and all her hard work with posts, flyers, posters and events is done. Thank you.
  21. We have exceeded our original expectations (please disregard the 87% of the target which we recently raised after £2,250 was achieved). The Fundraising is over & @HairyPete is restored to his previous appearance. It's been a fabulous year, all laid out in the diary. I've written (most of) it; Pete "just" grew that beard and hair, went around in his colourful state this past month - his own walking advert for YOUR achievements. In a previous post, I mentioned the scrapbook I am making ... progress has been slow. All the materials are collected together. Compiling the book itself will be a time to reflect upon 2019 and Pete's No Beard or Hair Cut (Colour by December) Fundraiser for Multiple Sclerosis Trust. He did it! Thank you for every penny of the £2341.83 that we've raised together. The Virgin Money Giving page will finally close on 31st January 2020. Happy New Year!
  22. Stumbler

    New symptoms and scary

    Hi @Chell1184! , does this tend to go with your monthly cycle? It's just that you body does go through temperature changes as you go through your cycle and this temperature change can play havoc with your MS. This is known as Uhthoff's Phenomenon. It may not be that, but you need to try and identify if there is any specific triggers that you can identify. It may be a reaction to the Aubagio, so you may want to stop that for a week or two and see how you feel. Then you can decide to start again to confirm the connection. Have a bit of sympathy for your GP. They are a General Practitioner, so can be completely out of their depth with MS. But, do keep your MS Nurse in the loop if you decide to stop the Aubagio and how successful this is. It's not that unusual to suddenly start having side-effects from a Disease Modify Therapy (DMT) after tolerating it without a problem.
  23. Chell1184!

    New symptoms and scary

    So my question is, does anyone else have fever like this every few weeks? I'm so cold, shaking, sweating so much my bf is changing sheets around me. Sleeping for hours. Shaking all night. I just need answers xx
  24. Hello. I was diagnosed with RRMS in 2014. Until the last 6 months, I have been coming down with fever so bad it puts me in bed for days and nights. I'm taking Aubagio 14mg daily. It's really starting to change my life. My gp is useless and does not listen. Neither does my ms nurse . Nothing gets investigated and I feel so let down.
  25. An update for you all... Thank you to Ben D, known to @HairyPete through Oldham Athletic, who has donated online, £15 plus £3.75 Gift Aid. Another BIG shout out for an online donor who 'met me' on social media, in a book group. Thank you Jo C for your £10 plus Gift Aid of £2.50. Keep reading, Jo! Plus I can confirm Gift Aid of a further £5 from the King's Chase donations. Wonderful. We now have £2,316.83 everyone, including marvellous Gift Aid! Thank you to everyone who has read and liked our posts (especially mine, obviously) throughout the year. Support in friendship is as valuable as support in financial terms - the latter is the one that helps MS Trust pay the bills AND reach out to all who have Multiple Sclerosis - the patients, their families, friends, work colleagues, the community around them. You've all been FAB - enjoy Christmas!
  26. We've added a further £163.67 to the offline total raised, making that now £1,419.71 which, in turn, makes a Grand Total raised (so far) of £2,280.58. This is FANTASTIC! We are both humbled and thankful that so many people have dug deep and helped the MS Trust like this. This is what the Colourful @HairyPete looks like now... This photo (below) was taken at Swindon Town FC on Saturday 14th December by Eddie Garvey, Oldham Athletic's photographer. With @HairyPete is the Match Day Press Officer and Commentary Summariser, Roy Butterworth. OAFC went on to a 2:0 defeat at Swindon, but I'm here to detail that £163.67 for you. It comprised: £50.00 collected by Lesley J in a Guess-the-Name of the Snowman competition held among our neighbours - so they've helped out again! £23.70 private cash collection from Lesley J too. £20.00 cash donation, on the day, from Roy £69.97 cash collection at Kings Chase on Wednesday 11th December (including a £20 sponsored donation that was Gift Aided - I will add in that figure once it has been ratified at MS Trust HQ. @HairyPete was getting rather chilly, despite the beard scarf and extra hair on top, when I rolled up at 2pm, so I encouraged him to finish by 3.30. He didn't argue! This past week has proved how each pence raised helps to increase the Grand Total. Not just that, it also proves how much the public, family, friends and neighbours care. Another Thank You from us. You can read this story, with relevant hyperlinks, at https://uk.virginmoneygiving.com/NoBeardOrHairCut
  27. Dotty

    Goosebumps

    Hi Marina, is certainly a jungle! I read some books on hypo and joined a thyroid UK group which is very useful. I told my daughter's to get their docs to do T3, T4, TSH but most importantly antibodies. I even write to one of their docs because my daughter was so sick and they did nothing but the TSH. They eventually did the antibodies too and the doc was very shocked when they were through the roof! It's so annoying when it seems we have to find these things out and then try to get them to listen.
  28. Marina

    Goosebumps

    In my ME days, ME was supposedly (also) brought on by a virus, hence it also being called Post Viral Syndrome at the time. Stress could also bring it on or make symptoms worse, but that also applies to many other conditions. Being fatigued with it gave it the additional name of Chronic Fatigue Syndrome. With 3 names to it, no wonder it’s confusing! Although NICE recognised ME as an illness in more recent years, there are still some doctors and neuros who don’t believe in it or who consider ME to be a diagnosis given by doctors who can’t find/think of any other condition the symptoms might be due to. Those who are sceptical might also say the same about Fibromyalgia. Hypothyroidism can also share many symptoms with ME and MS. I too was DX’d with hypothyroidism prior to MS, albeit sub-clinical or euthyroid (I forget which now), and I too thought my “remission” was due to starting on thyroid (natural desiccated thyroid in my case). There are many conditions that have similar symptoms to MS, some of which can be found here on our Resources section: Conditions that are similar to, linked to, or mimic MS This all just goes to show how difficult it is to DX MS (or ME or Fibromyalgia). Anything else has to be ruled out first, but how do you rule out ME or Fibro when there are no diagnostic tests for them and symptoms can be similar? At least there are blood tests for thyroid, but even then only if FT3 and FT4 are tested along with TSH and this is very rarely done, which can result in people being hypothyroid but being told they’re in the “normal” range. I hope you manage to sort out your ear infection soon enough
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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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