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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. Last week
  2. Stumbler

    Relapse

    Thanks for the boyish giggles, @Happymama . Generally, it's a good news story, which sounds very encouraging. And, you're starting to get Xmas preparations underway now! And 2 and a half stone lost. Well done on that. I also found another article on Reverse Immunology here :- Medical News Today Keep up all the good work.
  3. Happymama

    Relapse

    Hi again. Full moon on Friday so didn't sleep at all last night and had college today. I've lost a load of weight over the last year, two and a half stone and can run up the stairs again. I quite enjoy the effects of Lactulose. Full on rolling farts, absolute whoppers. Deeply antisocial and it does say on the bottle take it after you go but if I go on Tuesday morning I can't with college later. Would be embarrassing. So I take it at night and can tell if I've had a good night's kip - I let them off in the morning. If I've had a rubbish night, my innards keep going and it's all gone by morning. There's a new article on the Financial Times website, (you get three articles a month free) about immunology and how reverse immunology may have found a cure for MS - it works on MS in mice. It's been published. It's on the front page, further down, on the http/app.ft.com The spasms in my upper leg and groin seem to have vanished. I can even go up the stairs at college properly. So the sluggish innards are not relapse related, it is just broken. Lasted 11 months last time. First day of counselling each other, others were really rusty (who were there last year with me) but I dived in and the most critical feedback person wrote it up as amazing, and well done. I do love doing it. Lots of new people there, some never done any. And I'm really hot on the computer keepup now after last year's debacle at the end of the school year. Am also trying to get a job. Job Centre is a bit of a nag over this, but I guess with UC and not paying my council tax I could make an effort. Have asked for free meals at college so if desperate I could go every day. I've started buying Christmas presents, ouch car tax this month, plus tv licence, and car insurance next month. Need new seatbelt bits too. All cost.
  4. Earlier
  5. Marina

    Relapse

    John! Believe it or not, we do get people reading, they just don't post (or they join and rarely post and then don't return) I live with a sluggish bowel, probably have IBS too (which I did before my DX). Years and years ago, I used to occasionally use Lactulose, but then it started to give me belly ache. The only laxative I find gentle enough these days, and without making me bloat like a beach ball (which I already do anyway) is Senokot in tablet form, which I only take when really needed. Have you been able to see a neuro physio for your various pains? I'll echo John in wishing you best of luck with your Diploma year! PS - I'm late in replying as I did a gentle stretch in bed on waking (arms above my head) and immediately felt what feels like a pulled muscle in my right shoulder/neck, ack! So took a rest from the computer for a couple of days.
  6. Stumbler

    Relapse

    Do you get the feeling that it's just you and me (and Marina), @Happymama ? It seems that "forewarned is forearmed" is the strategy that you're applying to your sluggish bowel problem. It's a good way of managing it. Physical type of pain could be assisted by some gentle Pilates/yoga stretches. Just remember what my Pilates teacher used to say, "make the moves challenging, but not to the point of pain or strain!". Best of luck with your Diploma year. If you want it, you'll go and smash it.
  7. Happymama

    Relapse

    Sluggish bowel is with me again. I keep a diary and managed to head the issue off mostly. Bit of lactulose left after the last one a few years ago. Now a new bottle, and oddly, it's 1p less than three years ago! Left hip/groin/top of quads has now settled into a permanent nagging thing. Sometimes on, sometimes off but usually waiting to catch me out. know when you crick your neck and it hurts a lot? I get that in my hip. Eg gads, it hurts! I think arthritis is in there and mixing with the spasms. Have had the tingling on my shoulders as well, last few days ago. No electric shocks though, that's an odd one. None at all. Seeing a health work coach next week and back at college, diploma year on Tues next week too. Wish I could sleep better. four am yesterday, three today.
  8. Stumbler

    Ocrevus Treatment

    Hi @Emily and welcome to this rather inactive Forum. For issues of this nature, contact your MS Nurse. Their contact details should be available here :- https://mstrust.org.uk/information-support/support-services/ms-services-near-me
  9. Hi guys, I am currently on ocrevus treatment after having a fair few relapses over recent years and I cope well with it. But I find around 3 weeks before treatment is due, I suffer from "old symptoms" of MS which are normally controlled well. I'm really struggling with leg pain and fatigue, which were the symptoms I struggled with the most when I was first diagnosed in 2024. Does anyone else find this happens to them?
  10. jayjill

    Radiotherapy

    You too 👍🙂
  11. Stumbler

    Radiotherapy

    @jayjill , I gave up with the anti-cholinergics and now have a SupraPubic Catheter. I call it my inconvenient convenience, which has reduced the incidence of UTIs. I also take D.Mannose, a supplement, clinically proven to cut the recurrence of UTIs. We may be more than our bodies but we are born to evolve. Take care, Jill
  12. jayjill

    Radiotherapy

    Thanks Stumbler, good to hear from you. Sorry about the UTIs. I take betmegron (I think it's called) which calms an overactive bladder. I try to drink a lot of course. Yes I think the radiotherapy has really messed with my body, confirmed by recent MRI. I'm seeing MS nurse soon so can discuss all this with her. Good thing is, that I feel fine in myself. We are more than these bodies thankfully! Jill
  13. Stumbler

    Radiotherapy

    @jayjill , there isn't much activity here at all, unfortunately. Personally, I haven't had to endure any Oncological therapy so I have no experience to call on. As for SPMS, yes, the b*gg*r does seem to progress. It seems to "enjoy" your body trying to deal with any other restorative functioning. For me, it's always related to UTIs. They completely floor me which leads to hospitalisation. Recoveryfrom infection is fairly quick but just a few days off my feet is not so easy to resolve. I too have become very good friends with my wheelchair unfortunately. But, I still make efforts to try and recover physically. I can imagine that Radiotherapy can "knock the stuffing" out of you. And this can take a real effort to return to your baseline. But, never give up. Core and leg strength can be improved. Pilates is especially good for core. Maybe discuss some specific therapy with your MS Nurse?
  14. jayjill

    Radiotherapy

    Hello all. I have a question for those who have had radiotherapy like me. I had a course three years ago following breast cancer. Since then, symptoms have increased so much that I now need a power chair and a riser recliner. I used a walker before. I don't mean to upset anyone who is due to have radiotherapy but I think it is good to be informed. Jill
  15. Downwards

    Getting about at home

    Thank you Stumbler I will do that
  16. Stumbler

    Getting about at home

    @Softsqueezy Fran, contact Wheelchair Services and demand (politely) that they provide an interim solution. At the bare minimum, they should be able to arrange a service of your rollator, to stop it "flying away".
  17. Downwards

    Getting about at home

    Thanks for your replies Marina and Stumbler, sorry so long getting back on here to view them I moved 'home' recently ... I did have the most amazing level access bungalow but was pressured by my husband to leave it.. now I'm in a hell hole.. it's sheltered accommodation he was determined we should move into as he didn't like the area where my beautiful bungalow was... and this place was the only option to get out of that area.. this place has underfloor heating that residents have limited control over..mine is as low as its possible to go.. it's still 25c in here when it's 18c outside the open window inches away! God help me if we do get a summer.. we all know how heat affects MS.. I've filled in the forms at my local council to see if I can get another bungalow and I will NOT be pushed into leaving it next time...anyway I'm getting sidetracked.. I'm still waiting for a powerchair I went to wheelchair services passed all the tests just waiting for it to be shipped in from abroad they say..that was beginning of May when the guy came to do my home visit..im still waiting..I'm dicing with the risk of a nasty injury struggling round with a rollator that just slides along when I grip the brakes.. and then a lot of the time I just can't walk... Thanks for listening Fran xxx
  18. Stumbler

    What's Going On In Your Garden?

    My money is on the filesize. Mobiles have such good cameras these days!
  19. Marina

    What's Going On In Your Garden?

    I can’t imagine why Chrome on Windows should make any difference. I’d really like to be able to help solve this for you, @Gosport Nancy . I know these simple questions may sound daft, I’d just like to rule them out first: - The photos are “.jpg/.jpeg” and not “.webP” or “.heif” or some other newer file type that some phones might use? - Are your photos larger than 500kb (0.5 MB)?
  20. Gosport Nancy

    What's Going On In Your Garden?

    Hi there The only difference I can see ifs that I now have a Windows based laptop and the earlier photos I added here were from when I used a Chromebook. I uploaded the photos the exact some way from my laptop. I am using the Chrome browser and can upload photos on to social media but several other sites won't accept them
  21. Marina

    What's Going On In Your Garden?

    @Gosport Nancy A couple of questions about the problem with uploading photos... - How, or by which method, did you try to upload them? - What size were they? It's possible they were too big (in MBs) and that I need to change the size limit a bit to something a bit bigger. That said, if each photo was lots of MBs in size, that would be too big... For instance, phones these days tend to take photos that are huge in MB size and many websites or forums can't house photos of that size, which in turn would also take ages to upload and ages to display to visitors.
  22. Gosport Nancy

    What's Going On In Your Garden?

    Just found this thread again. Took some pics yesterday. I getting ready for No Mow May so it's wild flowers for me None of my files will upload to this forum so you will have to guess what my garden looks lik
  23. Happymama

    What's Going On In Your Garden?

    Did the first grass cut, and the two edges, but left the strimming till later. Dug up two dandelions and some meadow buttercup, plus one bramble. The Wallflowers are out and smell lovely. I'm going to give up on the grass, half of it is in deep shade. Am looking for ferns to plant in it, on Weds. Woodland flowers for under the trees. Might have a skinny strip of grass along the flowerbed to walk on but the dog will wear it out in winter. We're expecting a frost over the next few days. I've lost the fuchsia planted two years ago, and the feverfew is no more. I was hoping to split it this year, it was so big last year.
  24. Stumbler

    Relapse

    And, there's the problem. We need these people more than they need us! Is there any way to reincarnate these relationships? It would be the best way forward even if you had to grovel for forgiveness.
  25. Happymama

    Relapse

    I asked her to find me another, she agreed as I hadn't been treated very well, but that was before Covid. Now it's near impossible to get a return phone call. And the dentist has sacked me during covid and won't take me on again - they are all across the road from me.
  26. Seems fair enough then. I agree with your green credentials.
  27. Stumbler

    Relapse

    @Happymama , has your GP told you to find another Practice. If not, they can't refuse to see you. Is it the Receptionists not being able to find a suitable appointment? Your Neuro's hospital is where you went to see them.
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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.

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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