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  3. Dawn Langdon, Professor of Neuropsychology at the Royal Holloway, University of London, is supervising the following study: Guest-post: MS mindset – Multiple Sclerosis Research Blog MULTIPLE-SCLEROSIS-RESEARCH.ORG Many people with MS experience cognitive difficulties (poor concentration, trouble remembering, “cog fog”…). We know quite a bit about how these difficulties play out on formal... “We are trying to find a questionnaire that a person with MS could fill in, which could tell any health professional something useful about that person’s experience of their cognition. This could help the nurse or doctor present health information in a helpful way. It could flag up cognitive difficulties to health professionals and trigger them to monitor the additional risks that cognitive difficulties bring (poor disease management, including medication adherence; increased risk of falls and driving accidents; decreased involvement in life generally, including employment difficulties. If you would like to help, are a person with MS and can spare 30 minutes, please fill in our online survey. Also please pass this on to anyone else that you think might be interested. This study is the MSc Clinical Psychology thesis project for two students at Royal Holloway, University of London.”
  4. I don't get those type of electric shock sensations, but I do get what feels like a thousand wires shorting (vibrating) in my feet, legs and abdomen. I can't take Pregabalin or Gabapentin due to side-effects but I have found that Tegretol (or Carbamazepine) helps, not 100% but it does mostly reduce the sensations. It's normally given to MSers for TN but my neuro told me, when first prescribing it, that it can act as a pain killer for other types of (nerve related) pain. NSAIDs don't touch any of these neuropathic pains for me either. Tegretol's not an opiate either. Clonazepam can help with sleep too. This, like Tegretol, is initially an anti-epileptic, and is usually given to MSers for spasms. I find it helps a bit with the sensation of short-circuiting wires, but not as much as Tegretol. I can sympathise with the sleep problems, I get this weird insomnia too... I can be so tired that my eyes are burning and closing, I go to sleep and wake up an hour later, wide awake. I once tried Valerian but it unfortunately did nothing for me; I wasn't aware it could help pain too. When desperate, I now take a Sominex, which is an antihistamine really, and I sleep like a log, except it can make me a bit groggy the next day, so I now tend to take half a tablet and it seems to work the same but leaves me less or not groggy. I haven't found any natural things that help either pain or the insomnia-type sleep problems for me personally. However, CBD oil, which otherwise does nothing for me except maybe help my TN, does tend to help me stop "ruminating" when going to sleep.
  5. I totally agree with @Stumbler! Truly impressive Can't wait to see the end result!
  6. Well done, @HairyPete and @Shirl. Pretty impressive stuff.
  7. HairyPete

    Hearing

    I went to the doctor's the other day and told him my hearing wasn't as good as it should be. He said, "What are the symptoms?" I said, "Homer's a yellow fat bloke and Marge has blue hair."
  8. The hair, beard and fund are all g(r)owing well and we hope to hit the £1,500 mark before I'm back at our local shopping centre in August. We're very much looking forward to meeting all the brilliant team at MS Trust HQ next month. I haven't yet given permission for them to stroke The Beard, but I probably will. Now there's an idea; charge people for rummaging in the undergrowth. OK, I know there's a gag in there somewhere.
  9. @HairyPete sat at his fundraising & MS Trust awareness table in our local Shopping Centre again last Wednesday 19th June. It seemed quite a low footfall again but he raised £87.11 so he's very pleased. He also spoke with 3 people who either had MS or a connection with it. They were pleased to receive verbal and written information and were supportive of Pete in return. With another half a year still to go we feel the word is spreading well in this locality. He will be back at his table on August 21st when we plan to include a free activity for younger children as it will be the school holidays - we won't stop teens and adults having a go, but the little prizes might not suit! More about this when we have it ready. We have planned a trip to Letchworth in July to visit MS Trust HQ (Spirella Building). It will be wonderful to meet the fundraising team including our contact Erika. These supportive and friendly people will get to stroke The Beard and I've heard mention of a video. Where can I hide? We will report back soon afterwards. Meanwhile, I will let you know as and when the Fund is increased. Currently running at £1188.06
  10. @Happymama , I looked up Valerian and there's no reference to neurological pain relief. Talk to your MS Nurse about this problem. You may need a script for Gabapentin or Pregabalin. Neither are Opiates.
  11. Hi, I don't get disturbed by my symptoms when I'm asleep. The electric shocks - very painful, almost daily at times - in my foot have been coming for ten years and it takes a right belter for me to even notice it normally. I did once wake up in spasm, but that's by the by. The new moon phase disturbs my sleep, there's a direct correlation using a sleep app I used to have. And I'm perimenopausal and that mucks up your sleep too, with the huge swings in hormones. I'm a natural early bird, rarely sleep past five and have to go to bed at ten. The problem is waking very much earlier - two am say. I rarely get back to sleep. After three days I'm a night's sleep down. After six I'm in trouble. I bought Valerian to help with that and it does. I take two at bedtime and that's it till five. I'm only on NSAIDS, Valerian is a new thing. I take Boswellia Serrata too for my arthritis but none of the NSAIDs or Boswellia mask the electric shocks. Helped with the pain during the muscular spasms, given that my lat dorsii spasm felt just like having a broken rib for four days. The lactic after was painful too. I accept that if the neuro electric socks get to a point where they become unbearable will drive me to the GP for stronger stuff, I absolutely refuse opiates, they muck my up completely. But the Valerian is a source of GABA and that regulates neuro activity so whatever helps, right?
  12. @Happymama , that sounds very frustrating to say the least, When you say painkillers are no help, which ones have you tried and failed on? When it comes to pain, we have to differentiate between physical and neurological pain , as each are treated differently. See the following article :- Pain | MS Trust WWW.MSTRUST.ORG.UK There are two main types of pain in multiple sclerosis: nerve pain (neuropathic pain) which is caused by damage to the nerves in the brain and spinal cord. This includes altered... Does this provide any assistance for a way forward? There's also an article about sleep, which may help:- Sleep | MS Trust WWW.MSTRUST.ORG.UK Poor sleep is common in people with multiple sclerosis, with about 50% of people with MS reported to experience some form of sleep disturbance. Despite this being well known...
  13. This is fun. Not. Pain on scalp, spreads like the electric shocks on my foot, but I feel the tugging there and elsewhere, and pain. Very like the neuralgia I had years ago. Tugging there too. I get tugging on my hands sometimes. Painkillers no help but I've read up on Valerian - I sleep absolutely rubbish, probably the perimenopause but also during the New Moon lunar phase, I average 8 hours across three nights. Valerian apparently helps with nerve pain, ( A source of GABA) as well as being good at reducing anxiety and also getting you off at night. I'm not on any other meds, rarely take brufen or paracetamol because they never help with my painful symptoms, and the migraine I get goes with aspirin, and that's rare too. Took some after an hour of scalp hell and it seemed to work. Perhaps I expected it to ...
  14. University of Nottingham - Volunteers Required We are currently researching how people with Multiple Sclerosis use social media in treatment decisions and are looking for participants who are willing to tell us about their experiences. Are you 18 or above? Have you been diagnosed with MS (any type)? Do you use social media to find out about MS? Are you willing to be interviewed? Interviews can take place face to face, online or over the phone and will last about one hour. For more information, contact Caitlin Sorrell msxcs11@nottingham.ac.uk
  15. WobblyGreg

    DLA to PIP

    Well the letter arrived Just asked if I'd been in hospital or prison and if bank details were the same. Sent a 2nd class return envelope I took picture of everything and will send back today.
  16. It's getting very warm beneath all this undergrowth.
  17. The June photos are in the banner below! Note how you can no longer see Pete's throat. He won't need a scarf next winter but his beard and hair are both, I promise, squeaky clean EVERY day. Nothing else to report except we have a date for the colour dye that will be expertly applied by a stylist called Sam on 27th November 2019. More details to follow much nearer the day. Another of Pete's friends at Warmley Men in Sheds has donated £10 cash - duly banked with MS Trust and added to the offline total at My Fundraising Page. Help Shirley change the world! Make a donation now. UK.VIRGINMONEYGIVING.COM Shirley Davis is raising money for Charity. Sponsor them with Virgin Money Giving. .
  18. Stumbler

    Ketogenic diet

    @Happymama , I've seen good reports about the keto diet. Well, not so much a diet, as a different way of eating. It sounds like it's working well for you.
  19. Happymama

    Ketogenic diet

    I'm doing this new way of eating. One result is that I've had a revelation of cognitive enhanced thinking, and elevated mood (and weight loss). Basically, you go back to your 4000 year ago metabolic situation with your liver providing all the energy your body needs from fats you eat (and in the beginning, fats on YOU) and not the modern energy source Carbohydrates. It's a metabolic change and is perhaps as hard as giving up caffeine, or smoking. I've done both, so know. You have to give up sugar, and sugar is a drug. And a toxin. This diet is recommended to Type 2 diabetics, many of whom go into remission on it, and also to young people with epilepsy. After three weeks on this I'm in complete 'fat adaption'. I know this because of the reaction on my Ketostix. In the beginning you widdle on one and it's neutral. Then you ditch carbs, and start eating fats each meal to satisfaction and no further, and only eat when hungry. After three days or so you start creeping up the widdle scale on the Ketostix bottle toward dark purple, once in dark purple after ten days to a month, you go back the other way as your liver stops panicking and gives you masses of energy from healthy fats you eat. Livers apparently get less fatty on this diet. I've just had a blood test and my triglycerides are low, my good cholesterol is sky high and my bad cholesterol is rock bottom. I've lost 12 lbs. My blood pressure is as low as it was when I was 21, and I'm 51! It's not Atkins, it's a way of life, and after one week off carbs I could walk past a tray of pastries and ignore it completely - carbs no longer have hooks to hold me. This is extraordinary We're pescatarian mostly, with the odd BBQ meat blowout, and it's possible to get fats from veg sources enough to satisfy. Online recipes for veg meals tend to be cheese heavy but I use coconut oil to fry with (very stable at heat), coconut oil as the fat in recipes, and avocados everyway which possible. Eggs also. My girls prefer veggie food and eat carbs at school so I can't give them fat heavy meals much, they'd get like mountains in no time at all. So there's a bit of fiddling but it's not impossible, and I have now amassed a mass of keto hacks for recipes to suit. I downloaded a Keto Meal Plan from ketosummit online, it's free and comes with a shopping list at the end. All you need for your first month. I can't stand bulletproof coffee but have two small decaf fresh coffees with cream for breakfast every morning. It's not a diet, you never feel hungry and if you like pork scratchings - these days they have the same calories as a bag of crisps but it's fat calories not carb calories - then you'll be delighted because Mr Porky is my favourite fatbomb snack. Have a dig around. Dietdoctor has a lot of information, and recipes to get you started. I'm currently trialling keto bread. Lots of recipes put eggs in the bread but that makes it cake, IMO. I've a new one to try.
  20. Gosport Nancy

    Not Diagnosed Yet

    @Eastendgirl Thanks for your reply which is good advice for some people. I have had a carer's assessment but nothing came of it as my husband isn't happy with anyone else being his carer. I requested an update back in February but haven't heard anything back. It's really not a biggy as a diagnosis wouldn't really help my situation
  21. Eastendgirl

    Not Diagnosed Yet

    It sounds as though you could do with some support around your caring role, your Local Authority is obliged to give you a Carer's Assessment and support can be put in place up to 4 times a day that would enable your partner to be looked after while you have to attend appointments/scans etc. Just google 'Carer Support' or search directly on your local authority website. There is help out there but it often isn't promoted and you have to be insistent, but it pays off.
  22. WobblyGreg

    DLA to PIP

    I have been advised that the following is what I should say if the Nazi DWP Ring again.. DWP are not entitled to discuss your appeal award with you, so don't. If DWP try to insist you discuss your appeal award, tell them they must ask the judge for a statement of reasons (SOR). This is what they should do if they have a question about the tribunal's decision.
  23. WobblyGreg

    DLA to PIP

    @Shirl Funnily enough they rang again today same sort of time and yes I was out again lol Thanks for advice I hate DWP so much my hackles are instantly up. If I'm about I will see what they say and let you know.
  24. Shirl

    DLA to PIP

    I had a letter from an outsourced group after my DWP claim, followed by a phone call. They were based in London. The call proved useless (even though I was happy to give useful feedback) because the caller thought I'd been to an ESA Assessment centre, This was following my successful PIP claim. So we had to curtail the call before confusion drove me battier than usual. I think this may have been a similar call to you. It is up to you if you comply - it shouldn't be mandatory or too invasive. Hopefully.
  25. WobblyGreg

    DLA to PIP

    @Shirl Had a strange phone call yesterday whilst out taking son to school ( later than normal school run) My daughter said DWP rang said they wanted to speak to me about tribunal They were meant to ring back this morning never did! I dialed last no ring back said caller withheld number . My intial thought was DWP Usually send letter and it was scam ? Any thoughts ?....
  26. Gosport Nancy

    Not Diagnosed Yet

    @Happymama The neurologist said all my symptoms were likely caused by anxiety, without doing any investigations. I doubt getting a diagnosis will happen any time soon as I am a carer and am housebound so can't make long hospital appointments. My husband comes with me for short appointments but is needs 24/7 care now so no scans etc can be fitted in around my carer role. I treat the more trouble symptoms with alternative therapies or just put up with them while I pace myself, eat well and practice mindfulness meditation
  27. Gosport Nancy

    What's Going On In Your Garden?

    Same here but mostly on the grass. I soak the weeds with vinegar in the evening then have been digging them up the next morning. Bald patches have been raked over and covered in grass seed. I reckon this will go on all summer, but hopefully we'll have some grass to see next spring :)
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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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