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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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  2. 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.
  3. 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
  4. 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
  5. 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
  6. 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
  7. steven

    Nerve pain

    Thanks Catherine
  8. 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
  9. steven

    Nerve pain

    Thanks John, much appreciated
  10. 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
  11. 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
  12. 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
  13. Marina

    HELP & ADVICE

    Hi Julie and welcome from me too. Is Pregabalin the only med you’ve ever been given? If you’re wondering about meds for neuropathic pain, like for your feet on fire, things like Gabapentin and Pregabalin tend to be what they offer you first and usually work well for most people. Amitriptyline (an antidepressant) is another med commonly given. I can’t take either Gabapentin, Pregabalin or Amitriptyline due to side effects. I get feet on fire too, and things like inner vibrations. For me personally, I’ve found Tegretol (Carbamazepine), which is normally given for Trigeminal Neuralgia, can help the feet and vibrations. Some people find Clonazepam can help a bit, although it’s best taken at night as it can make you sleepy. As always with all meds, what works for one person might not work for another. Maybe these pages might help a bit? How is MS treated? | MS Trust MSTRUST.ORG.UK Treatment for MS may include medication, therapies, such as physiotherapy, and self-management techniques. Some people explore the use of complementary or alternative medicines... Treatment finder | MS Trust MSTRUST.ORG.UK The symptoms of multiple sclerosis can be managed by medication, input from therapists and/or the development of self-management strategies.
  14. Stumbler

    HELP & ADVICE

    Hi @MS JULIE and welcome to the Forum. It's been awfully quiet in here for ages, but we try and acknowledge and answer all posts. The first question I would seek to answer is what type of MS do I have? Relapsing/Remitting MS (RRMS) has way more options than the Progressive variants, Primary Progressive (PPMS) and Secondary Progressive (SPMS). This exact diagnosis will depend on your recent medical history, e.g. relapses, stc.. A new MRI scan may be requested for an up to date view. Then i's a case of treatments. I would categorise treatments into specific MS treatments, i,e, Disease Modifying Therapies (DMTs) and symptom management treatments. Any discussion on a DMT will be guided by your type of MS and its activity. As for symptom management, make a list of your main symptoms, as you have specified above, Discuss these symptoms with a view to discuss treatment option. In my opinion, Pregabalin is my preferred option over the other main option, Gabapentin. These don't cure the symptoms, but they do take the edge off and make the symptoms bearable. But see what the Neuro says. My usual advice for living with MS is to live healthily, eat healthily, exercise moderately and avoid stress. I hope this helps.
  15. MS JULIE

    HELP & ADVICE

    Good afternoon everyone. New to this forum, have RRMS since 2004. By and large up and tilll 2016, my symptoms were relatively mild and I went mild so if I ignored it, I didn't really have it. From 2016 , went from 2 legs, 2 arms walking with a stick to only right arm and leg working and in wheelchair . I have been taking 150mg Pregabalin for RLS, twitchy legs and feet on fire especially at night in bed for 10 years now. And this medicine controlled theses symptoms very well until approximately 6 months ago. Having no joy upon speaking to Neuro, who basically said there are no other options medicine wise for these symptoms, ( even after 10 years) keep on taking the pills and see you in 6 months 🙈🤔🙈 So took it upon myself and weaned off Pregabalin. And on Thursday 5th May I have Neuro appointment (Different) so I would like to go armed with as many suggestions/questions as possible. Would be grateful if anyone can help. J.
  16. Stumbler

    MS and COVID 19

    Hope it does the job for you, @UghHelpXx .
  17. UghHelpXx

    MS and COVID 19

    Got my IV Antivirals well worth it if any of you get offered it definitely take it
  18. Stumbler

    MS and COVID 19

    @UghHelpXx , I am so sorry to hear that you are suffering from a recent COVID Infection. I have been fortunate that I have managed to avoid this pandemic. But, I had been advised that I was considered to be vulnerable so I was advised of a procedure to follow that should kick in once I'd had a positive PCR test. As I understand it, if I was positive, I would be eligible for the new anti-virals, wHich should minimise the COVID mpact. So, contact your MS Nurse, if you have one, and/or your GP regarding the procedure for managing vulnerable people. Hope it clears up soon.
  19. UghHelpXx

    MS and COVID 19

    Heyy so I am boosted and vaccinated bit have been incredibly sick with covid. Especially nausea and worsened MS symptoms anyone else the same?
  20. Happymama

    New symptom and not Dx

    Hi have seen those. It's getting my left leg out that's difficult. Just hurts. I park away from the kerb a bit so that I can put my foot down properly on the blacktop and lean on the right leg getting up. PS have ordered a walking stick. Thanks! Leapt up to measure myself for it and realised that the issue has turned off. Again. Lol.
  21. Stumbler

    New symptom and not Dx

    @Happymama , here's a cheap little accessory which might make getting in and out of the car a bit easier :- Simply Car Handle Aid | Halfords UK WWW.HALFORDS.COM Shop the latest at Halfords UK
  22. Happymama

    New symptom and not Dx

    Thanks for the link, Stumbler! Getting in and out of the car can be a nightmare. Had a few days off, now it's the front of hip and glute only. And boy when it's here, it hurts to move. When it's not, it's not. Just been to the shop, left the house, it came on, limped all the way there, then in the shop turned off, walked home, in house came on. You just have to laugh. Am off to buy a proper sturdy walking stick next weekend. And a folding one for in case. At least then people might not speed up the high street as I'm crossing the road. Was nearly knocked over last week by some lunatic doing 60 up the road (there's a blanket 30 mph all over the town) as was half way across when it struck. Had a witness but no one caught the reg. Even the bus speeds. Makes me very cross. I have the tingles across the skin of my shoulders again, too. Feels funky.
  23. Aw, @honey2674 , don't feel alone. MS is an invisible condition, we don't look sick. And we don't wear T-shirts to announce our condition to the world. On this basis, your next door neighbour could have the condition and you wouldn't know! You shouldn't discount the local groups. I made that mistake. I walked into our local group, saw wheelchairs and walking aids and thought, "I don't belong here!". You have to understand the nature of local groups. They meet weekdays, when anyone under pension age is expected to work. So, local groups are full of the older demographic. These people are very senior age-wise, they are very old MS-wise. By this I mean that they haven't had the benefit of all the treatments introduced over the last couple of decades. Your prognosis is probably more favourable. So, don't be put off by the wheelchairs, etc., but look at the years of experience that they have to share. The other thing I noticed was that these local groups are usually very happy places. I wish I'd persevered, but I steered clear for about 15 years. When I did return, I saw the group in a new light. I started going to the group twice a week, participating in Hyperbaric Oxygenation, Pilates and even yoga. I also allowed myself to be thrown out of a plane, to raise funds for the group! So, don't be alone and sad. You need support and camaraderie. Joining this forum is a good start. It allows you to interact with others, whilst retaining anonymity. Regrettably, this Forum is eerily quiet these days. Just a handful of people still participate. It seems the latest generation of social media is more attractive. We all struggle in our own way, @honey2674 , but we all hold each other up too. We might find life somewhat restrictive, but we need to find ourselves a purpose. Your offer to also provide support here is a good start. Take care and stay safe.
  24. Hello, have been diagnosed for a long time now, 2008. I was forced to give up work due to how bad things got symptoms wise and am struggling day to day in which leads to a very low mood and lack of motivation. I don’t really have anyone near me and yes, local groups are available, I’m just struggling with doing that. I did, yet, something happened, which led me to walking away. I think I just need guidance on how to fill my days especially on the days I just want to do nothing. I just feel sad and somewhat lost, so I thought I would reach out. Any advice will be welcomed and I am here to support also. Thank you for taking the time to read this through and I hope your day is going well.
  25. Stumbler

    New symptom and not Dx

    @Happymama , I appreciate that money is pretty tight everywhere at the moment, but you should at least check out the potential cost, just to see whether it is definitely out of the question. I'm only talking about paying for the initial consultation to expedite any diagnosis. Then you could return to the NHS list for potential treatment.. Your GP should be able to obtain a cost. If you could ensure that all your previous scans and tests were available that would really help. Your GP should be able to assist here. You're not doing yourself any favours by blindly struggling around. You have probably picked up some bad habits whilst compensating for your struggles. So, talk to your GP about the possibility of a Neuro--physio assessment to check you out. That's not a normal physio, this one's a bit more specialised. So, a bit to talk about with your GP, methinks. If you feel that a walking stick would be a useful acquisition, you should check out http://www.walkingsticks.co.uk . You'll be spoilt for choice! (Other retailers are available).
  26. Happymama

    New symptom and not Dx

    Oh, wish i had money for a private consultation! I'd have been there ten years ago. I'm having a relapse. Symptoms in new places, every single one. Hurt to walk for the last three weeks, and more electric shocks. The one in my neck is absolutely horrible. The rest are just painful. Had weakness in my butt, one side, while having something going on in the joint of my hip, torso to left leg, and groin which finally left after 8 days leaving me with groin strain that took a week to heal. Coming down stairs for a time was a laugh a minute. I had to keep my left leg stiff, the glute would NOT support me. That's better now but my hip joint is flaring up when I move. Also can feel a little knot of spasm in a trapezius at the top. Every day is different, lol. I shall ring the GP tomorrow to find out what's what. I'll have a lot less stress when the kids move out in September to Uni. I'm thinking about investing in a walking stick.
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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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