Viewing 25 posts - 1 through 25 (of 25 total)
  • Getting diagnosed with MS. Tell me something that’s not bad
  • Premier Icon mikey-simmo
    Free Member

    In the process of having an MS disagnosis at 45. Progress with neuro is chaotic at best so still waiting for a formal meeting to discuss it.
    I need to hear people at living with it as it all sounds like the end of days for where I’m sitting.

    Premier Icon WorldClassAccident
    Free Member

    Can’t comment on MS itself but the blue badge parking is a bonus*

    *I would swap a thousand blue badges for a pain free ankle so I didn’t need it but it is the first thing I can think of right now

    Premier Icon Rona
    Free Member

    Sorry to hear it mikey-simmo. Wishing you all the best.

    Check out Andy McKenna here …
    https://www.stokedonms.org.uk/

    My daughter has MS and is more than living with it. She ran the London marathon which is a fair bit of progress from ‘needs assistance of 2’ to get to the loo. She has some videos on Youtube under #IzzyMS .

    Don’t ‘over-google’ as there’s a loads of tripe but more importantly the outlook for someone diagnosed now is not the same as it was when a lot of people were diagnosed.

    You need a good neuro consultant. There are (now) some really effective drugs which they’ll hopefully put you on.

    Premier Icon funkrodent
    Full Member

    My ex wife has lived with MS all her adult life. The good news is that the prognosis is much better than it was even a few years ago. The treatments now are far more successful in slowing, and even stopping the progression of the disease and there is lots of exciting research taking place that will mean mew treatments and therapies coming on line soon.

    That’s not to say it is all rosy, but it is certainly the case that it doesn’t have to be the horror show that it once was. Certainly its much more about managing it now than succumbing to it per se.

    If not done already, have a look at the MS Society website. Loads of good info on there. They’re a really good organisation that do so much for people.

    Premier Icon willard
    Full Member

    Have two friends with MS. One has it come and go in how much it impact him, but even 20 years ago managed well enough on a bad patch to play paintball.

    The other friend is super fit, does a lot of wild swimming and runs marathons. He and is partner pretty much live for the outdoors and how he does that, let alone with MS, I do not know. He does it though.

    Premier Icon salsa
    Free Member

    Hi

    Try listening to the Greg Bennett podcast be with champions episode 50 Dr Tommy Wood (there are 2 shows with him in)he reversed his step brothers MS and also mentions a doctor in America who went from a wheelchair through MS to cycling to work. A lot of hard work through reducing exposure to various things, diet and auto immune system.

    It may give you hope there are avenues to follow.

    Premier Icon MoreCashThanDash
    Full Member

    Someone I know through cycling has had MS for quite a while, she’s mid 50s now, jogs, cycles and swims, despite various other health complications.

    Premier Icon tjagain
    Full Member

    There are multiple different types of MS.  some very nasty some mild  cross your fingers for the mild type.  Beware the internet.  It will be both doom and gloom and also full of really bad misinformation

    Premier Icon thegreatape
    Free Member

    One of my team has it. She’s a fully operational and very effective DC, can hold her own in a scrap, and on top of a full time job she runs a not-so-small smallholding. While we’ve had to be a little cautious with Covid, it doesn’t hold her back at all.

    Premier Icon project
    Free Member

    My ex boss got it, she had worked with MS patients so recognized the symptoms , sadly her GP put it down to the menopause for her, eventually she got a proper diagnosis.

    Mt cousin also got it and she had the same problem getting a proper diagnosis and treatment, mentioned it to a retired GP freind, he said its problem to diagnosis its lots of tests etc, stick to your gut feeling and ask for more tests.

    What symptoms are you showing that make you think you have it.

    Premier Icon mikey-simmo
    Free Member

    Well balance trouble with leg sensation and fuzzy thinking with tiredness.
    Had mri but nothing in person. Hoping it’s treatable as id not like to this this was the peak.

    Premier Icon bedmaker
    Full Member

    My family is riddled with it. It’s shitty, no doubt about that, but it’s remarkable how life can carry on reasonably well despite it all.

    One of my aunts is now late 70’s, diagnosed 40+ years ago. She was very fit in her younger days. She’s pretty immobile now, but was reasonably independent until pretty recently.

    My brother has admitted defeat with getting his leg over his beloved BMW / KTM / Ducati bikes and has just got himself a low slung Harley Fatboy. He gets out on that regularly. Not sure if he has ordered a tasseled jacket yet.
    He was part of a drug trial over the past few years, which appears to havce worked well. IT seems to have held his condition pretty steady since starting it. It’s no cure, but it helps. Think the actual infusions were fairly grim at the time tho.

    All the best, as above, check out Andy MAckenna too. He’s been pretty quiet recently on social. Not sure how he’s getting on. Must be extra hard to take for someone who was so active previously.

    Premier Icon gardentiger
    Free Member

    I know the lady in the link below personally. She has, to date (9 years) arrested the development of any further symptoms. She’s done it with very strict diet control, but she’s done it nevertheless.

    https://overcomingms.org/about-us/facilitators/alexandra-blossom

    Premier Icon DrT
    Free Member

    Im an mser, diagnosed with PPMS (the shitty end of the MS stick) eight years ago. Im still mountain biking, just got in from a night at the climbing wall and still fairly active within my limits. Its not a bed of roses though and disease progression means I regularly have to recalibrate what my normal is, which is a bit of a grieving process to go through as you adapt to change. I would say its that acceptance of change process which is key.

    Premier Icon oldtennisshoes
    Full Member

    Get on top of your Vit D levels and check out the OMS diet/lifestyle.
    Don’t over google, consider meditation and good luck!

    Premier Icon TiRed
    Full Member

    MS therapies have come on in leaps and bounds after recognising that it is an autoimmune disease. This will only improve further in the coming years. It’s important to understand if you have relaxing remitting or primary progressive. If the latter, more aggressive early therapy may be better. I’m not an MS expert, but I did invent Kesimpta as a low dose anti-B cell therapy. I’m also familiar with other MS therapies being developed.

    Premier Icon DaveyBoyWonder
    Free Member

    My wife was diagnosed with RR MS about 9 years ago which later was changed to PP. I won’t lie, its awful. She was relatively active but now can’t walk more than 10m or so without a stick, even with sticks she finds it difficult to walk more than a few hundred metres. Bit shit at 41…

    Benefits? There isn’t any. Blue Badge maybe? I’m pretty OCD about our cars so having big anti-dickhead parking spaces is nice. She’s given up working in a job she loved and continues to go downhill with her health. She’s on medication (incl a 6 monthly infusion) to reduce the speed of the decline with the pay off of reducing her immune system – she started that the week before the UK went into lockdown #1. Perfect timing.

    Also have an ex-work colleague who was diagnosed around the same time as my wife. Doctors for years told him his mobility issues were due to an old cricket injury until finally coming to the conclusion it was MS.

    Premier Icon MrOvershoot
    Full Member

    Firstly mikey-simmo I’m very sorry to hear that,

    I’ve lived all my adult life with the effects of MS, not me but my wife.

    She was diagnosed at 21 very young I know, Carolyn went through relapse remit very quickly into SPMS.

    She went on to finish her degree and start her own business which she ran until 2012. Sadly she died in 2019 from aspiration pneumonia she was 52.

    I have a work colleague who I diagnosed with MS 20 years ago over a year before an official one was given, she’s doing great and has benefited from a whole range of treatments that were not available to Carolyn.

    You will have to keep pushing for answers and it can depend on where you live.

    keep us updated once you have a firm diagnoses.

    Premier Icon konagirl
    Free Member

    mikey-simmo I am sorry to hear that and I hope you get a firm diagnosis asap so you can consider what therapies are available for your condition. As others have said, there are different ways MS evolves and it will be a very individual journey.

    Someone I worked with was diagnosed just over 40 (also male) and went downhill quite rapidly in terms of fatigue, mobility and memory/cognitive fuzziness, but then remitted somewhat when he worked out the triggers for him. As TJ said don’t go down too many rabbit holes on the internet, even though it is good to hear of people who are managing the condition, no one solution will suit everyone. The immuno-response triggers are going to be different for everyone.

    Premier Icon mikey-simmo
    Free Member

    Thanks all. I’ve dropped milk cheese and butter (life is much sad) and started large doses of vit D at the suggestion of a friend who has it. It’s so individual I’m struggling to understand what’s ms and what’s just fear stress or age.
    Eyesight is okay in each eye but somehow together they are less than the individual. Very odd.
    Love how the neurologist says ‘seen’ in letters but I’m yet to physically meet anyone! Troubling and long term planning with jobs and having an exit plan agreed is a tricky conversation.
    Am just soaking up the news and coming to terms with how short life Could be.
    Thanks again everyone. Will need to do some carefull trigger investigation.

    Premier Icon DaveyBoyWonder
    Free Member

    I spoke to my wife about this thread after I’d posted above and she mentioned a few “positives”.

    You look at things in a new way / stuff grows a new perspective. Yes she’s had to give up work but this has given her chance to do new things she otherwise didn’t have time for – art groups in her case.

    There are a lot of support groups for MS so she regularly attends coffee mornings etc so suggest you maybe find something like that local to you.

    Premier Icon anniison
    Free Member

    Am just soaking up the news and coming to terms with how short life Could be.

    I hear you, it’s not a fun place to be 🙁 we can commiserate, drink, and fart a lot at the weekend while we muddle through and try to make sense of the shitty stick life has thrown at us! Still plenty of biking and fun to be had though, can guarantee you that 👍🏻

    Premier Icon mikey-simmo
    Free Member

    Completely weird post. I hardly know her!

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