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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. Stumbler

    Relapse

    You're needy, @Happymama . Chase up the GP to find out why the referral hasn't been made yet!
  3. Happymama

    How We With MS Feel...

    I've had this, it's sluggish bowel, and you can get lactulose cheap from your chemist, i take two big swigs a day. This encourages bacteria in your gut to produce lactic, formic and some other acid to proliferate, so the body throws water at it to cure the problem by thinning the acids out (Citric!) and the water softens the stools. When I had sluggish, I tried to go after a week and tore horribly. Took a laxative dose once a week and would crap a whole week out in one go. Then twigged what was going on and moved to Lactulose. Now I keep a diary to spot it coming sooner. OK so 'went, ok' isn't a great addition to a diary but it might just help me track difficulty. I once lost my shin. It's a funny thing to lose a shin. Your leg has this palpable conversation with the brain and then gives up. I had to hop.
  4. Happymama

    Relapse

    Hi stumbler, no. Hitiris the neuro would not see me. Said I'd canx the visit and six months after I received the letter and went for the appt I found this out. He'd canx the visit the day the appointment letter date had on it. I was in tears. Rang the GP was in tears to her, she said he'd said I was not bad enough, she'd find me a different one and then Covid struck. So here I am. Need to ring the GP but I'm sure there are people more needy.
  5. Happymama

    It's all gone quiet!

    Well it was 14 and I've left. For suggesting that some people find relief from cystitis take cranberry which was told to me by my GP and is still recommended by GP's. Apparently it's been debunked but still works for some people. Binned as a moderator, but only after someone dug something up from the past. All that free time gives me time with the online paper (the FT) and on discord with the twins, and in the garden.
  6. Stumbler

    Relapse

    @Happymama , are you still on a Neuro's books and see them at all?
  7. OMG thank you. I thought I was going mental, or dementia - I have to cycle through words to find the right one and though it was a perimenopausal thing, now I think it's because I'm in a relapse.
  8. Happymama

    Relapse

    Fine. To be honest, I'd love to get optical neuritis, might mean someone takes notice of my symptoms. I get flashes in the corner of my eyes, too, the outer corners. Muscle spasms, trying to take hold but I fight them if I can and sometimes head them off. It's a relapse and I'm six weeks in, or around there.
  9. Earlier
  10. Stumbler

    Relapse

    I can't really trust anything that happens in the middle of the night, @Happymama. You don't really know whether you're dreaming or not. I know our brains have gone a bit haywire, but it's still a very powerful organ, capable of all manner of tricks. Keep a note of it though. How was your vision in the morning?
  11. Happymama

    Relapse

    Had an odd symptom. Woke at four am, and was lying there on my side, looking at the bookcase, waiting for sleep. A dark bloom spread from one side of my right eye to the other like a cloud, then retreated. Then did it again. If I closed my eyes, it was in negative. This went on (rather entertainingly) for about 15 mins, then stopped. Then started on the other side and did the same thing. You can see through this at it's outer reaches but not the deep inner bit. Very odd indeed Thanks Stumbler but bladder now to normal, and I do keep a symptom diary, I keep a diary and odd ones go in there, as well as on here, lol.. No day is different. This I love.
  12. Stumbler

    Relapse

    Hi @Happymama , As you're presently undiagnosed, are you still on a Neuro's books to monitor you from time to time, say annually? In the absence of a Neuro, you're going to have to rely on your GP for any neurological symptom management, as you seem to be doing. GPs can prescribe anticholigenerics to relax your bladder, as well as muscle relaxants to address spasms. So, keep talking to them. But also maintain a symptom diary, so that you can update the Neuro, whenever you get to see them :- Symptom Diary Details Good luck with your college course.
  13. Happymama

    Relapse

    Hi all. To continue my undiagnosed journey with MS, I have developed tinnitus, thankfully without the attendant vertigo or dizziness (as yet). Also bladder issues FINALLY raise their head - went to the loo after an urgent message to go, widdled a tiny bit, half an hour later, went again after the urgent message, and finished the job. Both new, plus electric shocks in new places. GP advises that unless my legs give in the middle of the high street in town, I've no chance of seeing a neurologist for the foreseeable future, but to ring up if I get muscles spasms that cripple me again, he will prescribe me something to help, off ticket. This is what GPs' are driven to do now, to look after us properly - break the law. On the upside, I've started college, as a therapeutic councillor, and when I graduate there'll probably be one in every food bank and GP surgery - the former for the public and the latter for the staff.
  14. Stumbler

    Pressure relief cushion

    @baward , have a word with your MS Nurse to get OT involved. If the need is established, they may supply them for you.
  15. Hello. I think I need one of these. Does anyone have any experience with them?
  16. Stumbler

    Getting about at home

    @Softsqueezy , a powered wheelchair seems to be the answer, if there's room. They can have a small turning circle. Or possibly a small mobility scooter, if you would feel secure on it? The OT should be able to explore these possibilities. If you're unable to contact your MS Nurse, then Adult Social Care at your Local Council should be able to help.
  17. Softsqueezy

    Getting about at home

    Thanks so much for your reply Stumbler.. I've been trying to get in touch with my ms nurse but she hasn't got back to me as yet.. I was measured up for my current wheelchair by wheelchair services.. I only use it outside and im always pushed as I have very little strength in my arms these days.. trouble i was having was I just didn't have a clue what might help I keep buying things that don't end up helping.. so really I should be looking at getting an up to date assessment by an OT.. anyway! I have a clue now : ) Thanks again Stumbler. Fran x
  18. Stumbler

    Getting about at home

    You may be @Softsqueezy , Fran, but I doubt you're bouncy too! But seriously, as we age, we just don't bounce as well as we used to and, with MS, getting back up again can be problematic. However, I think you know the answer. If we can't trust our legs, then we have to consider a wheelchair. I'm not suggesting it to be your permanent place of residence in your waking hours, but a means of getting from A to B safely, when you can then transfer to your normal seated location, if this can be achieved safely. A wheelchair will also open up possibilities in the "outside world" too. But, don't go to your local shops to buy an acceptable looking pair of wheels. You need an Occupational Therapist to come and do a complete assessment. They can measure you for a wheelchair, it isn't one size fits all, and make suggestions to assist you, e.g. grab-rails. Contact your MS Nurse to initiate this assessment. Hope this helps
  19. Softsqueezy

    Getting about at home

    Hi, I'm just wondering how the less mobile of us get about the house/bungalow? I can only walk a few very unsteady steps, I have to use a wheelchair outdoors but have been getting about my bungalow by hanging onto anything I can grab.. I have a rollator but even feel unsafe pushing that and can only push it a few unsteady steps.. I fall often but have been very lucky not to really hurt myself apart from lots of bruises... I would love to get about my bungalow safely somehow.. without a 'close call' several times a day... any suggestions would be much appreciated. Fran x
  20. Are you interested in managing MS via lifestyle changes? Please join a new Multiple Sclerosis Online Course (MSOC) study to: (1) Received a free 6-week online course on lifestyle (diet, exercise, supplements, meditation etc.) (2) Interact with other MSers worldwide (3) Make a great contribution to MS research The course is designed and developed by MS researchers from the University of Melbourne, Australia. To register: OMS MSONLINECOURSE.COM.AU Question: neu-research@unmelb.edu.au
  21. steven

    Nerve pain

    Thanks Catherine
  22. Catherine

    Nerve pain

    Hi Stephen, I take Gabapentin, you need to start off on a low dose and gradually increase. I take 800mg 3 X a day. I hope you find something that helps. Best wisehs, Catherine
  23. steven

    Nerve pain

    Thanks John, much appreciated
  24. Stumbler

    Nerve pain

    Hi @steven , not many active members on the Forum at present. But a few of us are still here. Anyway, sensory symptoms associated with MS can be nuisance. They can come and go or can become more permanent. We just have to find a way to deal with them. This could be in the form of distraction tactics, medication, meditation or other complementary therapies. Medications (Pregabalin, Gabapentin or Amitriptyline) can help dampen down the discomfort. A chat with your MS Nurse would be useful for you. The following articles may also help:- https://mstrust.org.uk/a-z/altered-sensations https://mstrust.org.uk/a-z/mindfulness
  25. steven

    Nerve pain

    Hi all, Haven't been on for ages but wanted to ask about nerve pain, I came off plegridy during covid and have been ok until I acquired more numbness in my right torso and it is sore sometimes, I originally acquired numbness on my left torso in 1990 but with no pain, wanted to see if anyone has anything similar, the pain is primarily more noticeable when moving in a certain way, it might not even be that but thought I'd ask, I'm 55 yrs. Hope everyone is keeping the best that they can. Cheers Stephen
  26. Hi there My name is Mark Cruise and I'm the volunteer manager with the MS Trust. I wanted to let you know about a few MS specific volunteer roles that we have available at the moment. We need to hear from people who have a lived experience with MS and want to share their knowledge to help us improve our services Voice Volunteer - use your voice to help us develop future services: https://mstrust.org.uk/get-involved/volunteering/voice-volunteer Read & Review Volunteer - We need people to read and comment on our information resources and suggest improvements. You might also suggest new topics or ideas for our content team to develop: https://mstrust.org.uk/get-involved/volunteering/read-review-volunteer If you are interested in either role, or want to know more about volunteering with us - please do get in touch: volunteer@mstrust.org.uk Mark
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About Us

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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