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  3. Stumbler

    Waiting to see neurologist.

    Hi @Annie11 , Are these migraines helped by the Pizotifen? And is it taken regularly or reactively? Muscle spasms and cramps are a nuisance, especially at night when sleep is disturbed. Gentle exercise, specifically stretching can help in this respect. Have a look through this webpage and links for suitable exercises, concentrating on stretching:- Exercise | MS Trust WWW.MSTRUST.ORG.UK These pages look at how being active can help people with MS. As everyone's MS is different, so is their capacity for exercise. Whether you feel able to practice some gentle stretches or... There is also advice here :- Leg cramps - NHS WWW.NHS.UK Leg cramps are a common condition where the muscles in the leg suddenly become tight and painful. Also, a Magnesium supplement may help. This is something that you can try. It is now some six months after you spent £200 on your Private Neurologist. Has anything come of this other than the prescription for Pizotifen? Bloods were taken, did this assist the Neuro and what were his conclusions or their planned next steps? You may want to discuss this with your GP, to get their view on what you should have expected for your money.......
  4. Annie11

    Waiting to see neurologist.

    Hi all Just to update you. I Continue to have regular, sometimes severe migraines but the strange leg and arm feeling (like jumping nerves) are back alongside the odd hands spasm. Disturbed sleep, waking up and unable to sleep again for hours and severe calf cramps. (Have had foot and leg cramps before but had one last night when sleeping and still tender tonight, feels like the muscles are still ‘jumping’ a bit. The pain was so bad I jumped out of bed yelling but couldn’t stand, felt dizzy and nauseated (maybe with jumping up fast). Cramp took a while to start easing, I was crying with the pain. My GP has kept me on the list (3yr, waited one already) to see an NHS neuro. Saw private one in Feb. Wondering if if anyone else has the above type symptoms? I just feel there is more than chronic severe migraine going on. Appreciate that I can chat here as think I’m going crazy sometimes. many thanks Anne
  5. Hi @ronyb and welcome from me too As you've already noted, MS can be notoriously difficult to diagnose, especially when so many symptoms might be due to a different condition. You say you have cervical spondylosis; I take it you know it too can also cause things like numbness and pins and needles in legs, feet, arms, hands, and things like neck ache and headaches? It doesn't specify facial numbness as a potential symptom, but I've heard of others with spondylosis who've had facial numbness. That said, the facial numbness you describe is something I had once (and some other MSers too), on the right side of my face, in the year leading up to my DX (when I was 49), when it was initially thought to be Bells Palsy but neuros later said it wasn't, so I was left to believe it was due to my MS. In my case, it lasted about 3 months, then went away and only returned once for a much briefer period of just 2 or 3 days and it was much milder. Low back pain in MS can be due to changes in posture as a result of other MS symptoms or reduced mobility. If possible, an MRI of the lumbar region might help to see if there are any non-MS problems, eg, with discs? I also have cervical spondylosis, and other lumbar spinal issues (stenosis, disc problems and more). This makes it even more difficult for the specialists to know whether it's my neck/back or MS causing some of my symptoms. In some instances, the back problems can exacerbate my MS symptoms and vice versa, eg, an achy pain in my right thigh. One example that I have right now is intense internal vibrations (like an earthquake!) in my feet, legs and abdomen; and right now, I don't (yet) know if it's due to pressure on a nerve in my back or neck or due to MS "neuropathic pain" as I haven't yet asked my specialists about it. I now have terrible posture due to pain from my back and other pain, so that falls into the secondary type of MS pain due to change of posture. I can totally understand your not wanting to miss out on your fabulous 50th birthday gift! Might it be an idea to maybe first check with the specialist or doctor who deals with your neck spondylosis? If it is due to your neck, then it wouldn't be an "undiagnosed condition"?
  6. Hi there and welcome to the forum, Clearly you are worried about these new symptoms but I feel the main thing you should consider is just how important it is to put to rest some of those fears. The only way to do that is by first going to the doctor. With regard to thoughts on MS. It is sometimes true that diagnosis may take time, however, these days, as greater understanding about MS is gained, diagnosis can often be a short process. However don't worry about specific causes, better to get the process started with a doctor. This can often be frustrating but the advice here would to make notes on just where your problems lie and then condense these into a short list so that the doctor has a clear understanding. You also need to be prepared for waiting times to see specialists and have tests done. I hope you get some more input here as the forum is pretty quite at the moment, but you are very welcome, lastly I'm sure your holiday plans will be OK but do get your priorities in the right order. Nick
  7. Hi Thought I'd come here for a bit of advice I am 49 female and for the last few days have been experiencing numbness in my face - like when a dentist does a filling. My tongue and gums are also numb I have had numbness in the hands for years, possibly due to a compressed nerve in my neck (diagnosed as tennis elbow, then spondylosis via mri, my feet also tingle with strange feelings in my knees I don't have any pain anywhere apart from occasional lower lumber and mid back pain. I don't have any double vision, slurred speech. I walk a lot and keep relatively fit I've done some research hence being here. I know that it generally affects younger people, but can arise in my age group. I've read that if the problem is MS that it could take months/ years to get a proper diagnosis and that there isn't much treatment available. Early next year I will be 50 and I am planning a massive long-awaited holiday to America and Canada, however, I am fully aware that if I go to the Drs and they refer me to a neurologist I then can't get travel insurance due to having an 'undiagnosed condition' I've looked at the medicines available and they seem to prevent flare-ups by 30-50% but most of the treatment is physio, exercise, cognitive therapy etc (self managed) I don't know if I have MS, but if I go to the DRs and get a referral - then my 50th birthday gift won't happen Any advice - have I read the treatments wrong - is there a point going to the Drs at this point - how long do referrals take Thanks for your help
  8. The monthly photos have been assembled into the usual triptych format. This beard is famous... in Kingswood, largely thanks to Pete's appearances at his MS Trust Awareness and Fundraising table and also because Kingswood Voice has chronicled the story faithfully. Here's a link to the September Issue... on issuu: https://issuu.com/kings…/…/kingswood_voice_september_2019/26 The link takes you to the exact 2-page spread featuring our local MP and our own @HairyPete VIP but not in the same article.
  9. Marina

    MS Art Fair

    Ah, the MS Trust's "Secret Art Show"... I too bought artwork from it, during the last 4 or 5 years they held it, and I have a small collection of various CD-sized "masterpieces". I used to love it! Very sadly, they seem to have stopped it; the last one was in April 2016 The MS Trust still have a link to it, but no doubt it'll disappear at some point as it's well out of date now: A buyer's guide to the Secret Art Show | MS Trust WWW.MSTRUST.ORG.UK Please bear with us We have been running the Secret Art Shows online for a few years and they're always a very busy and fun-filled few weeks. The first year it was so popular that our... I so wish they'd bring it back!
  10. Happymama

    MS Art Fair

    Hi, I have two CD sized pictures that I like very much which I bought afew years ago from the MS Art Fair one November past. Is there one this year?
  11. Can I also mention that the perimenopause can cause cognitive loss? I'm having a terrible time in mine (with other symptoms) and can't remember stuff from one day to the next, forget things so easily, and have got lost in the car twice in the last week, plus driven straight past the x's on Friday dropping the girls off there. This is a general thing that's here all the time for the last six months (since other symptoms of perimenopause worsened) and not at all like the one I get that lasts about 8 weeks and makes me forget words. So if you are MS and perimenopausal and not on HRT ... apart from being very unlucky, there might be a mix up
  12. I like a hot shower, even when I know it will 'fatigue' me, that effect wears off quickly. The winter thing is maybe something to do with lack of getting outside. I've spent this whole summer outside and apart from those very hot days have managed OK. Anyway we sound like a bunch of whining idiots! So won't dwell on it to long. Nick
  13. Ouch, Nick, re getting a temperature during the recent heat! That is indeed a weird one... I'm glad all's OK now The heat thing is odd for me too, Nick, but maybe differently to you. I tend to like more heating in winter than average, and - believe it or not - I like hot baths! But summer heat has me knocked out. My liking more heating in winter, and your reactions in winter are maybe due to temperature sensitivity? I definitely feel the cold very easily! Temperature sensitivity | MS Trust WWW.MSTRUST.ORG.UK Some people can find they experience problems with both extremes of temperature. This can be hard to explain to people around you, as different symptoms may be affected by heat... In general, changes in weather seem to affect me, or maybe it's changes in pressure, as they seem to trigger TN/migraines/headaches and associated neck pain.
  14. That is an interesting article Marina, like a lot of us I often feel the effects of heat, yet why is that I also have a similar (but slightly different effect ) in winter? For me it feels like it is the change, or rapid change that causes this. On a different note I recently went through a very scary heat related event! It must have been a bug, but when I suddenly got a temperature the effect was very fast and left me unable to lift a finger, unable to do a single thing. This was the first time this has happened so fast. It took a couple of days to recover and made me much more aware of my own venerability. All OK now and back out in the garden enjoying the last of summer. Nick
  15. @HairyPete's collection last Wednesday at Kings Chase Shopping Centre, Kingswood raised a further £58.97 for the Fund. More than that, it spread awareness of Multiple Sclerosis and the MS Trust's supportive work. The fund now sits at a very comfy £1247.03. A surprise guest turned up (see photo) and enjoyed a really good chat with a couple of visitors. The carer with me also fetched Pete much-needed coffee and cake. Next time (11th December) Pete will be in full colour beard and hair (courtesy of Sam Burge of Sam's Salon in Kingswood) so that should attract some extra interest... Today was a pleasant day weather-wise but December will be a chillier affair. Anyone feel like knitting some MS Trust blue mittens? If you'd like to read the whole Beard/Hair story, please visit: https://uk.virginmoneygiving.com/NoBeardOrHairCut New photos will be taken on September 1st and there's been growth!
  16. Here’s an explanation about heat sensitivity and raised body temperature in MS. Heat – Multiple Sclerosis Research Blog MULTIPLE-SCLEROSIS-RESEARCH.ORG My thoughts are for our readers with MS who are having to live through and cope with the latest heatwave. The BBC has just reported that this is the hottest late August bank holiday on... I must admit that I didn’t stop to think that the heat of this weekend is why I’ve been saying my vision seems blurrier than usual! Doh..!
  17. The MS Trust have tweeted about Pete's Challenge and posted a link to Pete's video
  18. Michelle7070

    MRI Results not being available for Consultant

    Oh Nick, Now I feel very silly for my complaint. I can only imagine how frustrated you felt. I suppose I wanted to highlight to others about getting copies of your notes for future, although I am not sure that this would have been any help to you in the situation you had. I hope that you now have your foot support and that it is serving you well. Michelle
  19. Hi Michelle, That is very frustrating. I am a huge fan of the NHS but sometimes things can be more than a little annoying. Communications across departments and different trusts and hospitals, let alone GP's is often poor and it is good advice to keep track of things yourself. Make sure you have the direct phone lines to consultants secretaries and don't hesitate to contact and question. I was recently more than annoyed when I had to have a round trip of a hundred miles for an appointment for what I thought was for a specialist to fit a foot support. Having waited for two hours we were ushered into a room and the length of my foot was measured........and that was it!!! Having already seen the specialist physiotherapist previously I would have though this information could have been relayed without the need for me to travel. Nick
  20. I recently went to see my MS consultant in London to discuss treatments that were available to me... or so I thought.... when I got to my appointment, which had cost me (and my husband) £63.00 for the train to London to travel in peak time, I was told that my MRI results had not been sent to them and therefore they were not able to help me. I felt so frustrated that this was a waste of NHS time as well as mine, as my husband and I had taken the day off work to attend but this was also a waste of money. The only useful information I got was that I am able to request of copy of my scans to keep for myself. This was more a piece of information for others, to request a copy of your scans from your local hospital to be able to take with you to appointments. Moaning over!! I hope that this will save someone else from having the same frustrations.
  21. The MS Trust makes excellent information films. They've recently released one about the way enquiries for information are handled to ensure all contacts are shown the paths and choices before them. See here: Tip: subscribe to the MS Trust YouTube channel while watching this one! I recently visited the MS Trust offices and met the people in this film. They could not be more approachable, caring, kind nor could they have their hands on more information. Phone them when you need to MS Trust Providing information you can trust, supporting the MS specialists you need Talk to us about MS - 0800 032 38 39
  22. Thanks for your great description of your trip to the MS Trust in Letchworth! It sounds like it was most productive. I continue to wish you both all the very best with your superb fundraising. You can also see it embedded here: Well done @HairyPete !
  23. Visit to MS Trust Headquarters Thirty-two talented and kind people staff the Multiple Sclerosis Trust which is based at the Spirella Building in Letchworth Garden City, Hertfordshire. One Monday in July 2019, @HairyPete and I visited Letchworth, a place neither of us has been to before. We drove up on the Sunday and stayed locally for two nights. This meant we were able to check out the area, especially the Spirella Building which is the base for twenty businesses, including the MS Trust charity. Conserved by Letchworth Garden City Heritage Foundation, the building is architecturally and historically stunning. Yet is has adapted well to its contemporary use. We felt honoured to be there. We arrived for our 2.0pm appointment on Monday afternoon, to meet Erika Stone, who is our fundraising contact. We already 'knew' Erika from much email and phone correspondence. She has talked us through the process of fundraising, while administering the background tasks that make it all look so easy. The MS Trust staff each represent an element of the MS Trust’s mission to inform, support, fundraise and research on behalf of all who those affected by Multiple Sclerosis, whether personally or by association. There are too many names to mention in this fabulous team of dedicated, creative and clearly hardworking people that also looks after the interests of carers and health professionals. They ALL remain close to our hearts - we are sorry we did not meet all of you. We also learned about other MS Trust fundraising projects - well done, thank you and good luck to all of you. Next year, when Pete no longer sports his long beard and hair, we hope to continue raising funds. We are not yet sure how but if we can find another reason to visit Letchworth and our fab MS trust folk, nothing will stop us! Bookshop, cafe, restaurants, trees, colourful flowers, gorgeous Art Deco buildings - what's not to like! The fundraising video interview with Pete is at: https://youtu.be/9TVqC_vn1Is - enjoy!
  24. Stumbler

    Life insurance

    @Happymama , sounds like a plan to me........
  25. They're not the same drug, the generic name for Robaxin is "Methocarbamol" - the "carbam" part of the name could well cause confusion, though. Robaxin is a muscle relaxant, whereas Tegretol is an anti-epileptic and is also used for treating TN. I'm not surprised, it's always knocked me out when I had a bad cold! Those patches on legs... they're weird, aren't they? For months, a few years ago, I used to get a small one on and off on my front right thigh, a bit bigger than a 50p coin, that would either feel hot or come up with goose-pimples! Nowadays, my feet pretty much permanently feel like they're burning, and sometimes my whole leg(s) do too. Hot weather, like we've just had, can certainly bring out or worsen symptoms - heat and MS are notorious for not getting on with each other.
  26. Happymama

    Fasting Mimicking Diet

    It's an old topic, but diets are always around, aren't they? I'm on a Keto diet. You get into full keto and your metabolism changes, your liver starts to choose fat to burn, not carbs. It's how we are designed to be. Since giving up carbs - I manage on 20g of carbs a day, pretty much from some root veg and the odd glass of wine - sugars of all sorts have no hooks in me at all. I feel brighter, literally as if I've had an increase of IQ, which is impossible, but what is possible is that my carbs were dumbing me down, so I can now do the FT weekend crossword when I couldn't before. I sleep better, I've lost weight, blood tests - although i eat a lot of healthy fats - are great, and my blood sugar is dead level. T2 diabetics are put on the keto diet all the time. I'm pescatarian, often veggie, rarely red meat (I like it so a good vet could revive it so its a treat, once a month or so) and eat salmon, avos, mackerel, sardines etc for the fats, and the kids are stable on it totally too. They've not lost weight, I have. Lots. They have to eat a lot less carbs at school but have adapted well. And I give them less of the fatty option, if it's involving a cream sauce. DietDoctor is the place to start. Veggie isn't easy but it's not impossible. There's a lot of good advice on the UK Diabetes site forum too. It's not Atkins. It takes about a month to get fully ketonic, and you get something called Keto flu. Drink bouillon to avoid it. Drink a lot of water and salt your food. If I eat carbs now (fish and chips) I feel dreadful the day after. There has been no change in my neuro symptoms but I feel a lot better in my head.
  27. Happymama

    Life insurance

    It's just occurred to me that, as insurance goes up with MS (perhaps it shouldn't), annuities come with enhanced status with MS (perhaps they shouldn't for the same reason). Which is a winner with me, as that's what I'm probably going to be able to get! Just need a DX sometime in the next 16 years. I've had symptoms for ten, so there's hope. I asked about critical illness insurance when mine ran out, but the premiums are too high for me to pay. I have currently life insurance with my pension, so don't need to do anything for two years, but do have some share holdings that will pay for my funeral when I peg my clogs. There are some life insurance deals that advertise that you don't need to give medical evidence, on the TV. £10 a month. This isn't a rising term one, I suspect, so not inflation proof. I doubt their value. I don't have a mortgage and have three kids, one at uni, two in year 11 in September. They'll be 35 and 31 by the time I'm 67 (I had them quite late) and cashing in my personal pension to buy that annuity, rising term to make it inflation immune if its not enhanced because I have a DX, and claiming the State Pension.
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