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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. Happymama

    Bagpipe Swing

    Think they're a hybrid kind of bagpipes. Like the Northumbrian type, or Irish type. Great, though!
  3. Hi there John. Christmas was nice and relaxed, thanks! . Kids at their dad's Xmas eve till about 11 on Xmas morning, by the time they arrive the table is laid, the turkey is half cooked, the veg are ready and I've had a preprandial sherry or two. We had quite a lot to drink but not as much as on NYE. I've come out of the lactulose thing after two years of absolutely needing it which is rather nice. Only a few random pains in my feet to bother me, electric mostly. But in new places.
  4. Stumbler

    Bagpipe Swing

    @Marina , there could be the start of a new music genre. Imagine Guns'n'roses'n'bagpipes!
  5. Marina

    Bagpipe Swing

    I bet no-one ever thought bagpipes could sound like this!
  6. More here about the Molnupiravir and Sotrovimab treatments: Covid-19 treatments for people with MS | MS Trust MSTRUST.ORG.UK Covid-19 treatments for people with MS It also explains why you might receive a PCR kit in the post - without having received an email or letter from the NHS (or maybe from your GP) about why you’ve been sent it.
  7. @Happymama , it's the day after Boxing Day, so we're just about getting through to the end of Christmas! This must be one of the most stressful times of the year for the fairer sex. You ladies make Christmas happen. If things have remained quiet over this period, the you must be doing well. Just New Year to go...... Have a good one.
  8. Hi. It just comes on. Had it once since. Everything been very quiet now.
  9. The Neuroepidemiology Unit, University of Melbourne, has developed the Multiple Sclerosis Online Course (MSOC) to deliver a widely accessible and user-friendly educational tool for people with MS. The study has been approved by ethics committee and registered on MS Australia: https://mstrials.org.au/online-lifestyle-modification-course-for-people-with-ms/
  10. By the sound of it, it's for all MSers, regardless of whether they're on the DMDs or not.
  11. Good to know, but I wonder if it only applies to PWMS who are on DMTs, or whether it applies to anyone with MS who isn't on any form of treatment?
  12. “The government has announced that people with MS in the UK will be eligible for one of two new treatments if they catch COVID-19. Currently, treatments are only available for people already in hospital.” MS and COVID-19: Two new treatments available from mid-December WWW.MSSOCIETY.ORG.UK Find out about new COVID-19 treatments for people with MS.
  13. Stumbler

    Can I change my MS Nurse?

    @GwenStacey , there appears to be two MS Nurses based at the Princess Royal Hospital. I can't see any reason why you can't contact the other one......... MS services near me | MS Trust MSTRUST.ORG.UK Use our map to search for an MS service that is near to you
  14. Hi all. I would really appreciate some advice on if I can and how to change my current MS Nurse. I feel I'm not enjoying my appointments, I'm left very anxious before & after them and can't seem to 'gel' with my Nurse. I've been considering it for a few years and unfortunately I feel the situation isn't improving. I live in a rural area and have the choice between 3 hospitals (within a 1 hour drive) for an appointment but all with the same Nurse. I believe she is the only nurse for the Shropshire area. Any advice on how to change would be greatly appreciated.
  15. jayjill

    tamoxifen

    Thanks Stumbler! Triple whammy - like that!!! Yes, it's good to know these things to help decide on the way forward. Hope you are OK? Not much activity on here at present. I suppose people have other things on their minds.
  16. Stumbler

    tamoxifen

    @jayjill , I'm sure you'll agree that the route taken to identify and potentially benefit from this "dual-purpose" drug isn't the best. But, having had to take this path, hopefully you will get this dual benefit. And you got your mojo back - triple whammy! It's a shame that research into the Tamoxifen/MS link hasn't advanced that much in the last five years. I wish you all the best, @jayjill .
  17. jayjill

    tamoxifen

    This will only be of interest to the girls here. Last year I had breast cancer and it was treated with surgery, radiotherapy and chemotherapy, which was a daily letrozole tablet (to stop estrogen production as this was a tumour that likes estrogen). Thing is, that I kicked up a fuss as my libido got up and left. I was then given the option of tamoxifen as some women find their libido is better with this. Now, here is the interesting part, I searched the Web and found that the University of Cambridge researchers had done a study which showed that tamoxifen may help remyelination in ms! Who knew! Not my oncology team. Anyway, I think that is a little known fact which we girls need to keep in mind. And yes, my libido is much better now 😉.
  18. Cognitive difficulties are varied but common in people with Multiple Sclerosis (at least a third), with difficulties in areas like memory, attention and decision making. Our study is looking at developing a new measure to assess cognition, that more accurately reflects the day to day difficulties people experience. We have now designed a first draft of the questionnaire and are recruiting for the second stage of the research, looking at how well it is understood and used by the people it is designed for. We are asking people with MS to take part in an interview, discussing the new measure and your thoughts about it. This could either be in person or via video call (depending on location). We are currently recruiting (Dec 2021-Feb 2022)! If you have MS, are over 18, and have some difficulties with cognition, we would like you to take part in an interview for approximately 90 minutes, where you give your thoughts while completing the new measure. If you are interested in taking part and would like further information, please contact the research team (18736180@students.lincoln.ac.uk). This research is being undertaken as part of the Trent Doctorate in Clinical Psychology, jointly with the Universities of Lincoln and Nottingham. Ethics approval reference 2020_2204. Thank you for taking the time to read this post, I look forward to hearing from you Heather Heather Cogger-Ward (Postgraduate Researcher) Trent Doctorate in Clinical Psychology School of Psychology College of Social Science University of Lincoln Sarah Swift Building, First Floor Brayford Pool Lincoln LN5 7AY E: 18736180@students.lincoln.ac.uk
  19. Directory of UK travel insurers that specialise in covering people with medical conditions. All firms are authorised and regulated by the Financial Conduct Authority (FCA) and have been through a rigorous selection process to prove their specialism.
  20. jayjill

    Reaction to vaccines

    Thank you, Eastendgirl and Stumbler for your helpful and informative replies. I definitely need to have a plan in place for post booster care....will think about it.
  21. Stumbler

    Reaction to vaccines

    Hi @jayjill. I believe this issue is caused by the vaccine triggering an auto-immune response. That's understandable as the vaccine is an unknown intruder. As we know, our immune systems are compromised by our MS condition and just don't work properly. Any activation of our immune systems are likely to aggravate our MS symptoms, as anyone that has had a UTI will testify. How severely our MS symptoms would be "aggravated" is very much a personal situation as everybody's MS is different. This "aggravation" to our MS symptoms is short-lived as the immune system deactivates fairly quickly. A couple of days is realistic. Whilst this MS activity is tantamount to a relapse, it is in fact regarded as a "pseudo-exacerbation". What to do with the Booster? Well, it's definitely safer to have it, as a Covid infection could illicit an MS response as bad as the vaccine. Personally, I would have the Booster, but "prepare for the worst and hope for the best" for the following two days. Good luck.
  22. Eastendgirl

    Reaction to vaccines

    Hi @jayjill that sounds quite scary! The documented evidence doesn't suggest that people with MS would be likely to suffer a reaction to the covid jab, but there are always exceptions and you may have been one unfortunately. It's possible you may be offered a different type for the booster to the first two, it might be worth asking the question beforehand. If you have an MS Nurse, also speak to her about your concerns and see if she can suggest anything. I hope you get some advice that will enable you to make the decision that is best for you.
  23. Hello again! I have had a bad reaction to the second Pfizer jab and the flu jab which I had two weeks ago. After a few hours I cannot move my legs at all. Last time, this resulted in me falling in the shower room (I needed a wee!) and Dave phoning 999 so I could go to hospital by ambulance. I am now due the booster jab which is apparently stronger, so concerned that I needed to manage this situation, I phoned the GP. He said perhaps I shouldn't have the booster so I told him that medical consultant had advised that getting covid would be a lot worse than this reaction (clears up after two days). GP then asked me what I would like to happen. I said to be admitted to hospital via A&E before my legs went. He then said he would write a letter explaining the situation to A&E but GPs have no power to tell A&E what to do. On reflection, this leaves me feeling out on a limb. I've been advised by an admin to phone 111, which I will do tomorrow. I'm wondering if anyone else has had bad reactions and also, what advice would you give please?
  24. Stumbler

    The MonSter

    @Eastendgirl , if we can't laugh, I'd use the gun on myself................ Take care and keep smiling.
  25. Eastendgirl

    The MonSter

    Lol, thank you @Stumbler that made me laugh... I love your sense of humor!
  26. Stumbler

    The MonSter

    @Eastendgirl , I've got a gun, so send me your address! Not really, I haven't got a gun and North Wales is one helluva journey for me! For what it's worth, the sensory feedback from my lower legs means that I'm never sure if my legs are crossed or not, without looking at them! I also suffer from my legs not wanting to move in the morning. I just relax and try them in a minute or so. Cog-fog, yes! Word blindness is quite common. And it's so frustrating as I have an extensive vocabulary. But, I use the inbuilt Thesaurus on my PC to home in on the word I want. Yep, I believe in the hear after too. I go into another room and think, "What am I here after?"! Balance? A disaster area! Overall, in the grand scheme of things, these are frustrations, but no biggies. Try and keep a sense of perspective. I hope this makes you feel a tad better.
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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.


The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.
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