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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. I have lived with MS 14 years ( now SPMS), I’m housebound but I’m not in wheelchair! I walk and balance a bit dodgy !! I try to exercise so I don’t seize up and I teach other warriors exercises too !! It’s great mentally & physically! It increases fitness, endurance, strength, flexibility, gait, posture, balance, coordination and mood ! Decreasing spasisity, pain, weight, fatigue!! If you have MS like me ... If your balance is not good... If your walking is dodgy... If your body is seizing up... If your symptoms are exacerbating... DO THIS, SEATED, STANDING, LYING ONLY: “Multiple Sclerosis Fitness with Jayne MSer & Warrior “: YouTube U.K. Try if you are able to 💋Big hug 💋 Encouragement, inspiration and help is all I want to give!!!!!
  3. Earlier
  4. Stumbler

    SPMS help

    Hi @MrsCB, Duloxetine and Pregabalin are OK-ish for sensory pain, e.g. the burning, itching, pins & needles, etc. They're not so good for musculo-skeletal pain. The different causes of pain have different treatments. The following might help :- Pain | MS Trust MSTRUST.ORG.UK Pain Do contact your MS Nurse to discuss this issue further.
  5. MrsCB

    SPMS help

    Hello everybody. I have SPMS and have horrendous pain in my legs - has anyone any advice or suggestions for medication that might help? I already take Duloxetine and Pregabalin at their maximum dose.
  6. Marina

    Hypothyroid and remedies

    Ah, sounds like you've fallen onto a rare endo who's OK with NDT! They are few and far between. Getting there is indeed a long slog of exhaustion. Sometimes, some people up and lower their NDT doses from time to time, too, depending on symptoms. It's worth a shot giving NDT a go, even if it's a slow process of upping the dose by half a grain every few weeks till you reach what might be optimal for you. I know that a lot of people felt much better when they switched to NDT from Levo. As for the foot spasms, I guess only time will tell. If they one day come back for no apparent reason, then it might be that it's a newer MS symptom for you. Let us know, please, how you get on with the NDT if you go that route?
  7. Jez-benign

    Hypothyroid and remedies

    Thanks for responding, yes getting thyroxine right is a long process. I've never had foot spasms before they only started with levothyroxine. And yes he's suggested NDT as the next step if we can't get it right with synthetic thyroxine. It's a long slog of exhaustion isn't it.
  8. Stumbler

    Yippee, I have had the Vaccine

    @Marina , it doesn't surprise me that your MS had a minor "grumble"! The vaccine is creating antibodies and as we know, our compromised immune system doesn't like anything interfering with it. Glad you recovered quickly.
  9. Marina

    Hypothyroid and remedies

    It can be really difficult to tell the wood from the trees when it comes to MS and hypothyroid symptoms. Could the foot spasms be MS and just coincidence that they started when your thyroid dosages were increased? It can also take ages of trial and error in trying to find your "sweet spot" when it comes to the dosage. Might your endo be open and accommodating? I only ask in case NDT (Natural Desiccated Thyroid) might be better suited to you. It contains both T4 and T3 in natural form. Some people who haven’t got on with Levo, have found NDT better. But, it can be difficult at times to source it or to find a doctor willing to prescribe it in the UK. If you haven’t already looked into it and if you think NDT might be of interest, maybe one of these two (possibly "unconventional") sites might offer some insight or help? TPAUK WWW.TPAUK.COM Stop the Thyroid Madness™ - Hypothyroidism and thyroid mistreatment STOPTHETHYROIDMADNESS.COM Thyroid mistreatment using T4 medicine, hashimoto's disease and hypothyroidism misdiagnosis are too common. Find out the truth about this ongoing scandal. Re LDN, an increase in spasticity is a known side effect for some people when they first start using it, it usually wears off after a while. Did you try lowering the dose to see if it made any difference?
  10. Marina

    Yippee, I have had the Vaccine

    Well, rather belatedly as I was beginning to think I'd been forgotten about, given that I'm in group 5, I finally got my vaccine last Saturday, the AstraZeneca one. It was the doctors from my and the other local surgeries doing all the vaccines, and I didn't even feel the jab, which surprised me. I fell asleep on the sofa later in the day, and was so tired in the evening that I went to bed early, and slept a further 11 hours. Woke up the next morning with a whopping headache, and my left leg was weak and wobbly and would nearly gave way under me. For fear of falling over due to my leg, I used 2 sticks to walk about the house, and had to keep my leg straight whilst not bending it at all, when I normally only use a stick when out and very rarely when at home. Luckily, the leg problem improved a lot within a few hours. A couple of hours after I got up, I suddenly felt hot and sweaty and found I had a temperature. Oddly, and again luckily, that only lasted 2 hours, and my temperature returned to normal. The headache (migraine?) lasted all day. I slept for 2 hrs in the early afternoon, and again fell asleep later on the sofa for 3 hours, as I simply couldn't keep my eyes open, and again went to bed early. The day after, I was almost back to my normal, I just still felt a bit on the sleepy side. And no sore arm either, or rather, just the very occasional tiny flicker of a momentary ache that was barely noticeable. All in all, I'd say I had pretty mild side effects, mostly the enormous sleepiness and the headache, for which I'm so grateful given what I've seen others have gone through.
  11. Just sharing for information. I've had what appears to be benign mild MS for 20 years and lived with fatigue ever since. 3 years ago after a year of much more severe fatigue (and very low mood) I was diagnosed hypothyroid and put on Levothyroxine. Within weeks energy began to return and my mood improved significantly. Eventually when I got up to a T4 of 21 my energy returned to normal (MS normal) but then I started getting horrible foot spasms which I've never had before. NHS consultant was friendly and totally unhelpful so I'm using a private endocrinologist. He's prescribed T3 which immediately got rid of the spasms but reduced the T4 back to 15 and huge fatigue. He also tried LDN which I hated, increased Spasticity and so I came off that. Currently trying to increase the Levo while keeping on the T3 but I'm still dead. Interested to know if anyone else has been down this route? Jez (I'm in the UK)
  12. Shirl

    Yippee, I have had the Vaccine

    Well @Stumbler it hasn't dented your GSOH! My arm hurts now. I'm being rather precious about it considering what I went through last year! We keep rolling along, getting nowhere in particular but deeply grateful for loving our home and each other. What else is there in life other than the obvious deprivations!
  13. Stumbler

    Yippee, I have had the Vaccine

    I had the Oxford AstraZeneca. Well, I think I did.. With the lack of after effects, perhaps I had a placebo........
  14. Shirl

    Yippee, I have had the Vaccine

    Hi All I had mine on Wednesday. The NHS experience was brilliant, a consortium of 4 GP surgeries, including our own. I even had one of our GPs do my jab. Since then, I was unwell all night long Wednesday - hot, restless, could not sleep, awful headache. Yesterday continued in the same way. Then last night I slept like a log and woke this morning fresh and happy! But my arm now aches and feels heavy. @HairyPete had his two weeks ago and was exactly the same, possibly more feverish. We both had Oxford AstraZeneca but he does not have MS. We are BOTH very glad to be on the road to some kind of normality, eventually, we assume! Waving to you all 👋👋
  15. Marina

    Yippee, I have had the Vaccine

    That's fantastic news for both of you! Do you know which vaccine you were given, and have you been given a date for your 2nd jab? I'm in group 5 (65+ yrs-old) and not on any DMDs as I'm SPMS, so hopefully it shouldn't be too long before they start on my group next. Michelle, I'm sorry you had what sounds like an awful reaction but glad you're over it now. Thanks also for your kind words about what has now become a really quiet forum!
  16. Stumbler

    Yippee, I have had the Vaccine

    @Michelle7070 , the vaccination team came and got me a couple of weeks ago too. I wasn't expecting to be called anytime soon as I didn't consider myself as vulnerable. I had a phone call on the Monday, asking if they could come round the next day - I'm housebound. I was so shocked that I just agreed and didn't think to question anything. I was jabbed by 09:00 the next day. No ill effects, just a mildly sore arm. It's an impressive operation by the NHS.
  17. I just wanted to say that I am currently having the Ocrevus treatment and am over 50, so I was given the opportunity to have the Covid Vaccine, which I was so pleased to have. The NHS are amazing for the system they have organised to make this a safe and speedy operation. As for the vaccine, I have to say that I suffered quite a horrible headache for about 4 days and my body felt like it had been 10 rounds with Mike Tyson, but all said and done, this was nothing compared to what may have been the symptoms should I have contracted Covid. I wanted to write this as there seems to be so much negativity around the whole situation, the way that I am looking at it, is that I am here, I am able to have dinner with my husband and chat to my children and am looking forward to welcoming my first grandchild into the world. This seems very mundane, but they are the things that make me smile and appreciate being alive. I hope that everyone that is on here, is keeping safe and avoiding this awful virus. Sending positive vibes to you all, thank you for the chat and information that has kept me sane through not only this current situation, but also through my MS journey so far. Keep up the good work everything you post and your replies are so valuable. Michelle
  18. Hi everyone, I am currently conducting an online survey to collect data for my master thesis. The thesis deals with a digital device called inContAlert and its influence on quality of life. inContAlert measures the bladder filling level continuously. It is still under development, however, a lot of people with bladder dysfunction will hopefully benefit from it in the future. Link to the survey: https://ubayreuthmarketing.qualtrics.com/jfe/form/SV_6WiG72lYEf61flH Completing the survey takes about 10-15 min. Since I am still looking for participants, I would be very thankful for everyone who fills out the survey!😊 (Patients but also caregivers, nurses, or assistants of patients can participate.) In case you have any questions, please feel free to contact me at any time. Thank you very much for your support!😊 Katrin Huff
  19. Marina

    Covid-19 vaccine information

    The MS Society and the MS Trust pages on the vaccines, with updates. MS and the COVID-19 vaccine WWW.MSSOCIETY.ORG.UK Can I get a COVID-19 vaccine? Is the Pfizer-BioNTech coronavirus vaccine a ‘live’ vaccine? We’ve spoken to leading healthcare professionals to help answer your... Coronavirus, Covid-19 and multiple sclerosis | MS Trust MSTRUST.ORG.UK Coronavirus, Covid-19 and multiple sclerosis
  20. A description of the different parts of the brain. An explanation of how MRIs work and what the different types of scan show and how they pick up lesions. Includes a video on “Understanding your MRI”.
  21. The MS Trust take a closer look to find out more about the research behind the headlines about the potential treatment for Multiple Sclerosis which uses technology similar to two of the Covid-19 vaccines. Researchers develop mRNA vaccine to treat MS-like condition in mice | MS Trust MSTRUST.ORG.UK Researchers develop mRNA vaccine to treat MS-like condition in mice
  22. Stumbler

    Covid-19 vaccine information

    @Marina , I've been indoors since August 2019, when I came out of hospital following another UTI. My MS suffers from what I call Uri-progression - I'm never the same after a UTI! Going out is now too damned difficult and I just decided that there's nowhere I really want to go! It's not fair on my wife, Colleen, but going out with me just wouldn't be enjoyable - I'd be anxious and stressing and so would colleen, so neither of us would enjoy the experience! Colleen had the vaccine on Saturday. Just to show you how much disarray the NHS is in, her superiors were unable to arrange the jab for her, so she took the initiative and arranged it herself! So, in three week's time, she should have some immunity. But, I agree with your view, that whilst she should be able to manage the virus herself, would she then become contagious.....?? It's not a good time for Colleen, whose been redeployed to the wards this week. There's just a lot of pressure on everybody. Teamwork seems to have gone out of the window and that's before you have to deal with all the numpties!
  23. Marina

    Covid-19 vaccine information

    Only if you catch it, John, and then it’s not a given that it would be a severe case; saying “susceptible” is a bit like saying “might”. Even though I didn’t technically have to shield as I’m not clinically “extremely” vulnerable (merely vulnerable ), I have been shielding since March by choice. The only times I’ve been out is to go to the dentist for a tricky root canal treatment, and no-one comes into the house unless for emergency repairs when all precautions are taken and windows opened, etc. I’m super careful with any deliveries too. I live alone, so it’s a bit of a tough call (especially when your other half is in another country!), it’s just as well I’m used to not going out much due to my MS. Has your wife had the vaccine yet? Although I believe it doesn’t stop transmission as such... It must be a harrowing time for your wife. I know an NHS nurse too and she has to face all sorts of awful things, including anti-vaxxers and covidiots who think the virus is a hoax, etc...
  24. Stumbler

    Covid-19 vaccine information

    Oh 💩! I'm over 60, SPMS, I'm a man, EDSS of 7 AND my wife is an NHS nurse! I'm toast!!!!!!
  25. This is very early days, but might offer some hope for the future? BioNTech Vaccine Treats MS in Mice Without Dampening Immune System MULTIPLESCLEROSISNEWSTODAY.COM BioNTech’s experimental non-inflammatory vaccine — designed to dampen the abnormal immune responses seen in multiple sclerosis (MS) against myelin — delayed the onset and...
  26. Marina

    Covid-19 vaccine information

    This article refers to the Pfizer and Moderna vaccine, and not to the Oxford AstraZeneca one. The coronavirus and MS – updated global advice WWW.MSIF.ORG MSIF's advice has been updated following extensive consultation with MS neurologists and research experts from the MSIF movement. It also says: “The following groups of people with MS are more susceptible to having a severe case of COVID-19: • People with progressive MS • People with MS over the age of 60 • Men with MS • Black people with MS and possibly South Asian people with MS • People with higher levels of disability (for example, an EDSS score of 6 or above, which relates to needing to use a walking stick) • People with MS and obesity, diabetes or diseases of the heart or lungs • People taking certain disease modifying therapies for their MS” I’m SPMS, over 60, and have an EDSS of 6... but due to a possible anaphylactic allergy to penicillin, I may not be able to have any of the RNA vaccines, although the Oxford AstraZeneca one should be OK.
  27. Happymama

    Swallowing - odd sensations

    My GP has been very understanding and is finding me a new one. Hard to see them now, with Covid around. I'm happy to wait till we're all inoculated.
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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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