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  3. Stumbler

    ///WhatThreeWords

    Fascinating. Here's a link :- what3words | Addressing the world WHAT3WORDS.COM Explore the world in 3 words. what3words is a giant grid comprised of 57 trillion 3m x 3m squares that cover the entire globe. It is the simplest way to communicate location.
  4. Happymama

    ///WhatThreeWords

    All our emergency services know about the ///WhatThreeWords location system. Please look it up, and then write yours by the phone. You need any of them and you quote that three word name and they can find you within a couple of meters. There is an app so you can always know where you are by that system. Some idiots were lost in Hamsterley Forest, and they used it to tell the police where they were. The Mountain Rescue found them within fifteen minutes. It's a frankly brilliant idea.
  5. Hi Chezer68 and another welcome Perhaps you'd be kind enough to let us know how you get on? And please feel free to chat about or ask any questions you might have, whether about DMDs or anything else
  6. Chezer68

    Is tysabri as terrifying as it sounds

    Thanks for your comments, really helpful to hear the experiences and views of a fellow mser rather than a medic or info leaflet
  7. Hi Chezer, I was one of those involved in a two year study trail by Biogen into the use of Tysabri for SPMS. One of the good things about having monthly infusions is the careful monitoring process that comes with it. The risks over PML and the JC Virus should be carefully explained to you, and while there is this 'technical risk' it should be seen in the context of benefits outweighing that particular risk. During my trail this was explained by the neurologists so that I had a much better understanding of it. Once again it's a case of trusting those directly involved in your care, rather than 'doctor Google' Like all things in life, risks are always present. I for one was so glad to have taken that risk, if only for the fact that having had regular contact with those involved in my care made me gain a much broader inside into my own MS situation. Hope that helps Nick
  8. Stumbler

    Is tysabri as terrifying as it sounds

    Hi @Chezer68 and welcome. Disease Modifying Therapies (DMTs) for MS are all powerful drugs and each have their own risk profile. Avonex is an "entry-level" or first-line therapy, which has been around for at least 20 years. During those 20 years, medical science has advanced exponentially and there are now a range of more efficient DMTs available. The thinking behind DMTs is also changing - why start first-line and accumulate damage before moving up. So, there now seems to be proactive and conservative Neuros. Tysabri is one of the more effective drugs, treated by monthly infusions. The risk profile has been identified by the clinical trials and you will be closely monitored to ensure your risk levels stay within acceptable thresholds. As I said above, there are a range of DMTs available, so there is a choice for a treatment that fits your lifestyle. You should be given that choice. Have a look at this website for some assistance with choosing a treatment, that may suit you better :- MS Decisions aid | MS Trust WWW.MSTRUST.ORG.UK Filter, compare and select treatments for relapsing MS There is some greater detail here :- https://support.mstrust.org.uk/file/DMD-Book-Final-WEB.pdf
  9. RR MS for 19 years, 3 relapses in last 12 months on avonex, 2 new lesions on MRI so bloods taken today for jc virus and tysabri due to start later this month. Looking for some feedback from anyone else on tysabri
  10. Such generosity means so much. Big thanks again to everyone who has donated and/or helped in any way.
  11. It's me again with lovely news indeed! As we've said before, @HairyPete belongs to the Warmley Men in Sheds group, meeting once a week for various projects and accomplishments in a well-appointed workshop attached to the local museum. Shed is therefore a generic rather than strictly accurate term. Today, at their meeting, Pete showed the two MS Trust videos he made in July (see below). The Men unanimously donated a further £50 cash to the Fund which is so generous as they were early donors in February. More than one surprise was in store for us... our friend Hazel pledged verbally (to Shirley, not Pete) that she would donate £10 per month and present the total at the close of the year. Hazel is unable to come to the Hair Do on 27th November so she presented Pete with her £120 cheque today. So, that is a total of £170 added to the Raised offline total, making it £977.88 to date. The total fund stands at £1570 tonight (including Gift Aid). Wow! See these relevant MS Trust YouTube Channel Videos: Five Minutes with a Fundraiser and Pete & Shirley's Story: Caring for a Loved One with MS
  12. New month, new @HairyPete photos! This time, the photos tell the message - nearly there! If you are a supporter, know Pete and want to see him newly dyed, just ask one of us for the location. We have to keep it away from Public eyes for security reasons as it is our home. Please visit the sponsor site for a full story of Pete's hair growth & fundraising so far this year. Or simply scroll through this thread. https://uk.virginmoneygiving.com/NoBeardOrHairCut
  13. Shirl

    New diagnoses

    My mind was working along that thought but my words only implied it. Thanks @Stumbler for clarifying the whole GP/Neuro scenario. And yes, learning to handle - or avoid - stress is key. A wise GP friend once said: Pressure in life is unavoidable - stress as a medical term is the result when we handle pressure badly. I'd love to tell you @Omilou that I've become an expert at stress avoidance. Not so. But I must have improved over the 20+ years because it is always noticeable when I'm struggling with pressure as most days are now controlled and calm. Most, not all
  14. Stumbler

    New diagnoses

    Hi @Omilou and welcome. I don't have much to add the useful advice provided by @Shirl above. I must admit, I'm a bit ambivalent about GPs that give a 99% diagnosis. Is it helpful to you? There's "forewarned is forearmed", but what if he's wrong? I'm just not sure. Anyway, take your time whilst considering what's been said. But, do bear in mind that MS is no longer the condition that it used to be. There are now medications available which are capable of reducing MS to just a name. Just don't over-stress the situation. Stress is like a red rag to a bull with MS!
  15. Shirl

    New diagnoses

    Hi Omilou and to this board Firstly, any mention of MS is always a shock, but also an explanation of symptoms and signs. Based on the events so far, your GP is thinking MS and right when he says the Neurologist must confirm this for a diagnosis. So a sliver of caution - be as open-minded as possible - very difficult, I know - until you receive that diagnosis. Don't make any irreversible changes to your employment or financial status. Just look after yourself and learn some relaxation techniques. Eat healthily, keep active and enjoy life. Once the diagnosis is made, nothing will change in that it will only confirm what you know so far about the way your eye went blind. Come back to us as many times as you wish and do let us know the news. If there is any doubt you have MS, you'll experience mixed emotions. Come back then because several members have been through that too. The MS journey has many twists and turns so we need each other to steer a steady course. Thank you for joining us.
  16. Omilou

    New diagnoses

    Hi all, Back in may I went blind in my left eye and was told it was optic nuritis, I had a course of steroids an the sight came back. I had an mri done and it showed lesions on my brain, I have now been refered to see a neurologist my doc has reviewed my mri and symptoms an said he is 99% I have ms but can't put it on my notes as it has to come from the neurologist, can my doc be wrong or is this pretty much a Garunteed diagnosis. Thanks for your help.
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  18. Hello, My name is Kyle Harrington, I am a researcher at the Institute of Mental Health at the University of Nottingham currently looking for people living with Multiple Sclerosis to complete a survey about the access people have to technology, and any particular difficulties people may encounter using their phones, tablets and computers. This work is part of a larger project seeking to develop a standardised cognitive screening and rehabilitation for people diagnosed with multiple sclerosis, so that people can get access to the support they require, if necessary. The survey will take approximately 20 minutes and will allow us to better understand any potential challenges that people living with Multiple Sclerosis face when accessing and using technology so that we can better design solutions to fit people’s needs. If you choose to take part in the survey, you will be given the opportunity to enter a prize draw where you could win £50 worth of shopping vouchers. This is an academic study and has been given approval to be posted by a moderator. If you wish to complete the survey, please follow the link below. https://nottingham.onlinesurveys.ac.uk/mstechnology
  19. The Cerebral Lateralization Laboratory at Montclair State University is conducting an online research survey. We are interested in learning about perception in adults who have been clinically diagnosed with Multiple Sclerosis. The survey takes about 10 minutes to complete. Some people who complete this survey may be invited to complete another survey. If you are invited to complete another survey, you will receive additional information. If you are an adult interested in learning more, or in participating in the survey, have been clinically diagnosed with Multiple Sclerosis, please click on or paste the link below into your browser. https://montclair.co1.qualtrics.com/jfe/form/SV_4HZVtgZDeiz6i7r Thank you. Ruth E. Propper, Ph.D. Director, Cerebral Lateralization Laboratory Montclair State University Montclair, NJ
  20. I've just added £3.25 Gift Aid recouped by MS Trust from recent donations. I also added £14.62 myself in recognition of the next phase of Pete's Fundraiser. From now until 27th November, we will be concentrating on the Hair Dye Do. My choice of donation level has rounded the fund up to....................................................................................................................................................................................................................................................................................................................................................................................................................£1400 today! During the coming weeks, if my health stays stable, I will be compiling a scrapbook for Pete's Hairy Year. As we journal the story, we will share snippets with you all. The Hair Do event is being held in the place where we live. For both privacy and practical reasons, we cannot reveal the address online. A reminder about the Fundraiser for MS Trust https://uk.virginmoneygiving.com/NoBeardOrHairCut
  21. Nick

    DLA to PIP

    That's a wise answer!
  22. Stumbler

    DLA to PIP

    Yes, @Nick , you do need to fully understand the questions AND the correct way to answer said questions. Preparation is so key. I don't get dragged into actual political discussions - too divisive! They're all as bad as one another!
  23. Nick

    DLA to PIP

    Thanks for that John, What gets me is the legal aspect of all this. The law is not clear, so how can you honestly decide just how you answer the question. It's all very well to simply tick the box, yet that fails to address the problem............I know, I know..I should not be concerned about all this, but it does annoy me! What I would say is that the physical"Interview" by theDWP (apparently not a medical) is a complete waste of time and money. What does matter is understanding how to answer all those questions correctly and understanding what those questions actually refer to. The reason it annoys me so much is that for many people the complexity of this means that the outcomes are simply in favour of the governments reduction in health care. Yet for all that they are apparently spending more money on these outsourced schemes than they would if they simply scrapped the whole thing. A legacy I believe of right wing politics and a chap called IDS.
  24. Stumbler

    DLA to PIP

    @Nick , I'm sure BoJo appreciates your sacrifice, for the good of the country. So, your reduced award was for two years? Did they really expect you to be cured in this timeframe? I'm still waiting for my invitation to apply for PIP. However, you should indicate that you can't walk 20 metres. Why give them the opportunity to mark you down? They don't need more encouragement. Well done for being prepared. Take no prisoners this time.........
  25. Just a note to say we had an unexpected donation from one of Pete's Oldham AFC pals, on Virgin Money Giving and Gift Aid applied. Provided that is ratified by MS Trust, the Fund has swollen by another £25. Every pence matters - thank you!
  26. Nick

    DLA to PIP

    You may recall that my PIP application process back in 1018 was successful, although I had to concede my original 'higher rate' mobility for the lower rate.(I could have appealed but decided not to) So here we are approaching 2020 and once again I must start thinking about PIP. The claim runs out this coming august and there is already a need to start planning for it!! What a pain! Generally speaking I see my neurologist once a year and I saw him a couple of weeks ago. This was an opportunity for me to discuss PIP. I don't really feel that any neurologist should be spending their valuable time on bureaucracy , however he was only too glad to discuss this forthcoming claim and told me that I should be able to claim the higher rate of mobility. He has provided me with a covering letter, describing my diagnosis and limited mobility. It's apparent the DWP rarely, if ever contact specialists directly from the details on the completed application, rather depending on what documentation the applicant includes. Even then I wonder if any of that gets read! The dilemma now facing me is exactly how I fill in that form. I shall be doing these with the support of the Benefits&Work website, to which I subscribe, thereby having access to the full range of advice. When it comes to the mobility section I have a choice of 'how far can you walk' That is where it gets complicated ! Certainly I can walk more than 20 Mts, but can I do that repeatedly? can I do that on a bad day? can I do that when my MS hits me, or is affected by a UTI, or those other outside influences? Then the answer is no, so do I tick the box that says "It varies" These are the finer points of how hard it is to get across anything meaningful on a form whose decisions are made, not by a person, but by an algorithm in a computer. As time ticks along I will keep you all informed on how things progress. Nick
  27. Apparently referendum occur all the time in Switzerland, over here this rare event seems only to have caused one massive split. Whichever side of the fence you sit its apparent we shall all have to face disruption for a number of years. The ridiculous thing about it is that IT IS only 'regulation' Medicine is still produced it the same quantity in the same places as before,all that has happened is the paperwork will be different (and of course more of it) I am dreading any loss in the continuity of my prescriptions. This will definitely have a very serious impact on my ability to function. There is however very little I can do to change the situation. In a past life I would have put it down to the will of the Gods. In this day and age I simply have to hope that a solution will be found to the whole fiasco! A bit of topic but I needed to get that off my chest Nick
  28. Baclofen is one I also take. I could swear Clonazepam, Tegretol and Propranolol (which I take) and Gabapentin (which I don’t take) were on that first list when I posted it... maybe they’ve since edited it? Ah, Clonazepam (albeit in liquid form) and Tegretol are listed on the (older) list on the Epilepsy Society’s site, as is Gabapentin. The steroid Prednisolone is another important one, for RRMS’ers in relapse... I have noticed one thing in recent months: that the expiry date on most (not all) of my 6 prescriptions are a lot shorter than they used to be, some only up to Jan 2020 when they might previously have been good for at least a year if not two; although I haven’t yet figured out why that may be. Today, this was posted: The truth about Brexit medicine shortages - TruePublica TRUEPUBLICA.ORG.UK However, the problem of medicine shortages is now becoming a real issue so we have published the latest list direct from the pharmaceutical industry Without going into the ins and outs of it, I fear the whole Brexit thing is far more complex than simply regulations, and that a No Deal Brexit will bring huge disruptions. Even with a deal, there’d be disruptions but not all of which may be immediately felt. They used to say “a week in politics is a long time” - right now, it’s more like “an hour in politics is a long time”! With the way things are and the way they keep changing, who knows what the final outcome will be.
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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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