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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. Happymama

    USB heated slippers

    43 is a size 9. I'm a 43. So not a 12.
  3. Earlier
  4. Marina

    Dx with low vitamin D

    I too would think that having a review would be a good idea after taking such a high dose. I started off on 5,000 daily, like John, and a blood test later showed me at the higher end of "normal". I now take 2,000 daily and have no idea what my levels are as I haven't had a blood test for it. If needed after your review, or when you're left to "fend for yourself", D3 can be bought very cheaply on Amazon. They say it's best when in a capsule with olive oil rather than as a hard pill. PS - I'm going to move this to the MS discussion area as it can be of interest to MSers, being as many of us also take Vitamin D.
  5. Stumbler

    Dx with low vitamin D

    @Happymama , low vitamin D is pretty endemic in this country for the reasons you specified. 40,000 a week may seem excessive but you're deficient so a review would be useful. If it helps, I've been on 5,000 daily for some time and it hasn't done me any harm.
  6. Happymama

    What's Going On In Your Garden?

    Have trays for seedlings now and some seed compost, just arrived this week in B&Q. The hazel is now coppiced, the front garden is full of it's branches. The chap is coming tomorrow to shred all the lighter bits for his garden, chop the trunks up for me for the BBQ and that will be it. Done. I have seeds from last year (and the year before) but I know some will germinate so will plant too many and see what comes up. I have some little cucumbers that taste of lemon that I want to try. I'll use an old grow bag with some miraclegro mixed in and this time put them on the grass so they get proper sun. This is the last year for the porch to grow tomatoes in because when I start my degree in September I shall get the metal framed sliding door replaced with patio doors that are triple glazed with the first maintenance payment (i'll get both bits) and get rid of the derelict porch and redo the decking which is the wrong way up and rotten. My potted geraniums flowered all winter! I've put the non flowering ones out where they'll get sun, their pot is large so frost won't affect it too much. The small ones that hang on the fence, flowering fit to bust, will stay indoors till it's a bit warmer out there. The Camellia only has two buds left, which is what survived last year. Had loads on before Christmas. My photinia red robin is covered in new bright red growth. The victoria plum is flowering two months too early, April/May it should flower. I never get fruit from it now. Global Warming has confused it very much. We used to get wind from the West (and the rain scraped off on the Pennines) but now more and more it comes from the south carrying warmth and a lot of rain.
  7. Well, yes, it's winter and I live in the North where it's colder than most of the rest of the country. Walking the dog I have to cover up, usually bar my hands and face. Out shopping, ditto. Feather filled long coat with hood and deep pockets is my new winter coat and I love it. Gp has given me a supply with a message to fend for myself after - I have D3 in now. The capsules she's given me are 20,0000 unit each 2 to be taken once a week - I must be really low. I don't drink a lot of milk, only at weekends do I have a jug with a large pot of decaf coffee both days in the morning. I eat cheese but not every week. I eat almonds, and leafy veg, but my nails are rubbish and always have been. This might have been going on for some time. Last blood test I had was 15 years ago and in summer. Vit D probably sky high from me being in the garden all the time. Should I ask for a review after, say six months to see if the Vit D is sticking? I know it does not for some.
  8. Happymama

    Relapse

    No, it's a urine infection that science can't diagnose for some odd reason, urine stinks to high heaven, is cloudy, and very much comes and goes. Also something a lady of certain age will get when her u-bend dries out and the lactobacillus film in there dries out that protects her innards, so infection gets in - known as VB. Antibiotic cream, and oestrogen pessary to sort it. Think the bug crawled round to my urethra, hoping the antibac cream I'm shoving up there will make it to my bladder. Its getting absolutely everywhere during the day so there's a good chance! Was at the GP twice last Friday, first to look inside to see what's wrong, and get a smear at the same time, and then later to get bloods, BP and BMI for prep for HRT. The oestrogen pessaries are tiny and I've had three but I can feel the oestrogen lifting my mood so totally. Sleeping like the dead too. I can't wait for full on HRT. Bliss! The electric shocks died down in the end, and took up in my toes later. Nothing else since bar a bit of muscle spasming in my shoulders, only short lived. The weighing scales at the GP had a radically different reading to mine. Might have to test mine with a kilo weight to see how far it's out. Anyway her reading puts me in healthy just. I've lost loads of weight, gone from a sixteen top, 18 bottom to 14 all over. And my trousers need a belt or they drop onto my waist now. So more coming off. Good to put the perimenopause behind me.
  9. Marina

    Relapse

    @Happymama I don't know if it's the same or a similar sensation but for a while, a long time ago, I once had a sort of buzzing feeling "down under". Some MSers, who'd also experienced it, suggested putting a pack of frozen peas there! I seem to remember that I didn't quite feel like freezing off that part of me , so I've no idea if it would've helped.
  10. Gosport Nancy

    What's Going On In Your Garden?

    I'm loving all the replies about your gardens Since I have lost the ability to walk on grass, I have had to pay someone to keep the garden tidy for me. I'll add a pic of the daffodils when they appear, as my assistant planted some for me late autumn last year
  11. Stumbler

    Relapse

    Kidney infection/stone(s)?
  12. Happymama

    What's Going On In Your Garden?

    My geraniums are still flowering fit to bust, with new growth coming on, in the Conservatory. Last year's seedlings, still seedlings (such was last year's summer here) are finally growing as well, as are my potted herbs. The olive lost a few leaves but I did let it get too dry, it has buds on now. In the garden, someone's mid way through coppicing the hazel. The trunks (three) will go to a wood carver, the branches to the man who's doing it for free, and the rest of it, through his shredder for ground cover. I need to get veg seedlings going, this weekend's job off to B&Q for other stuff so will get some coir seed trays there. I don't plant the coir though, I pull them out because the roots find it hard to get through the coir. Then I just compost it.
  13. Happymama

    Relapse

    Further to the trouble down under now gone, I now have itching electric shocks in the same place as peeing glass shards came from, plus round the back. Horrendously painful and driving me MENTAL. No cure for this except a sense of humour. And a glass of wine.
  14. Marina

    Relapse

    Glad to hear your UTI's settled, @Happymama I get D-Mannose from Amazon, where there's the usual plethora of brands. My other half had a UTI, so he tried my D-Mannose and it cleared it up for him too. It comes either as a horse-pill sized tablet or in powder form. I get a particular brand of the tablet that isn't coated, so I can suck or chew it as I can't swallow those huge tablets! It's a natural sugar, from cranberries or another plant, so care might be needed if one's diabetic, especially when using the treatment dosage which consists of taking it every few hours rather than once or twice a day. The NHS now suggests it too as a means of preventing UTIs from coming back, as noted at the bottom of this page on the NHS site (most of us are more than aware of the rest of what they say above the bit about D-Mannose!): Urinary tract infections (UTIs) - NHS WWW.NHS.UK Find out about urinary tract infections (UTIs), including what the symptoms are, when to get medical advice, how they’re treated and what a chronic UTI is.
  15. I take Co-Enzyme Q10 every day. I originally started taking it about 30 years ago to treat heart failure. It must have worked as it's unusual for people to survive that long with heart failure. I haven't taken anything specifically for M.E. as I have got along without it. I rest when I need to and choose to live alone so I'm not looking after someone else. I recently spent 9 years as a carer and now want to get my health back on track and work towards my plans to move back home to Hampshire to be near my family
  16. A friend has ME and takes Monofidil twice a day, plus a load of other stuff.
  17. Happymama

    Relapse

    Yes I looked it up. Think that was it. Now just lactic filled, now relaxed thankfully. Where do you get D-Mannose from? I heard it worked, but can't find it anywhere. UTI now settled, thankfully. A month. Potassium Citrate, two boxes cost me £12. But worked. Changes urine to more alkaline so helps the soreness of the urethra, and I suspect the onslaught of that plus the daily litre-plus of herbal tea, plus cranberry AND barley water worked too. Mind you the daily litre-plus of herbal tea, you'd think this would stop me getting UTI's. Flushing ...
  18. I apologise for the misunderstanding. I have been able to manage the ME as much as I can. I was a member of Action for ME back in the early 90s and I still take their advice from their website.
  19. I'm so sorry you have all that to contend with... it all sounds quite awful for you. By "chase up", I meant follow up, as there are things like ME clinics to maybe help with the ME side of things. I do hope you manage to move, and get the help you're looking for and need.
  20. Gosport Nancy

    Claiming DLA whilst living abroad

    Looks like I wouldn't qualify then as I have been unable to work for decades due to being a carer or having medical issues that exclude me from work outside of the home. My national insurance contributions were paid for me while I was a carer
  21. I've just checked and this is what the Gov.uk site says: Claiming benefits if you live, move or travel abroad: Benefits for carers and people with disabilities - GOV.UK WWW.GOV.UK Benefits you can claim if you go abroad and countries with social security arrangements with the UK It's not based on tax payers' money, it's based on NI contributions.
  22. My health record already has a diagnosis of ME recorded so it doesn't need chasing up I still think the neuropsychology appointment that is in the pipeline is the way to go. I am now in stage 4 heart failure and stage 3 chronic kidney failure so unless something changes it's unlikely that I'll survive long enough to see the next doctor on the list of assessments. My main goal is to move closer to my family while living close to the best hospital for my cardiac needs. I can always then go to Portsmouth Hospital Trust for their input as I am getting no-where in East Sussex
  23. Gosport Nancy

    Road to Diagnosis Update

    I haven't asked for help here. I am just sharing my lived experience. I have already made steps towards getting a neuropsychological assessment and the waiting list could be up to 5 years. My main goal is to move back home to Hampshire but I don't have anywhere to live there as I haven't had a big win on the lottery. I am currently in social housing as I am living in the flat I shared with the previous tenant who has died. The plan is to move to Portsmouth so I am close to a hospital that has the best facilities for me as a cardiac patient and I will still be close to family in Gosport.
  24. @Gosport Nancy A diagnosis of ME may be something for you to chase up? I was told I had "classic" symptoms of ME about 20 years before my DX of MS, when MS wasn't even considered. ME and MS share many similar symptoms, so it can be difficult for doctors to tell the wood for the trees. Unfortunately, there's no test for ME (unless one's since been found), whereas we have MRIs and LPs for MS. To this day, we don't know if my ME was actually MS or if I might actually have both. That said, I did have a bit of tip-of-the tongue word finding difficulties prior to my MS DX, and it's got a bit worse since then, which I put down to the MS.
  25. Gosport Nancy

    Claiming DLA whilst living abroad

    I have someone on my social media contacts who has lived in France for more than 10 years. She can claim the care part of PIP but not the mobility part. Maybe it's just me who thinks that if someone chooses to move to another country from the UK they shouldn't expect people who pay taxes here to support them overseas. I claim benefits here because I live here and am claiming through the UK benefits system. I only found out recently that some state-funded income can be imported.
  26. Stumbler

    Road to Diagnosis Update

    Just trying to help, @Gosport Nancy . You do seem to need an advocate to fight your corner so that the NHS can "join up the dots" for you and get you properly looked after.
  27. @Gosport Nancy This topic was about "exporting" one's DLA benefit when moving to another country as an expat, a bit like how people may be able to receive their UK pensions in another country when they've moved there. However, things have probably changed regarding receiving disability benefits when moving abroad since this topic was first posted in 2009. We're not really aware of how things like this are today, especially as we're now no longer in the EU.
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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.

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