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The MS PEOPLE UK Forum
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  • Marina%s's Photo
    Marina replied to the topic "Medical marijuana strain for pain?" in General Discussion about MS.
    Scully, it hasn't had all of the "high giving element" - THC - removed. It still contains THC albeit at a lower level than the normal stuff. Sativex has a 1:1 ratio of CBD and THC, which means equal parts of both. That's why some people still might experience a bit of a high. As an aside, THC is...
  • Scully%s's Photo
    Scully replied to the topic "Medical marijuana strain for pain?" in General Discussion about MS.
    Sativex has also had the cannibis high giving ' element removed, so, although some people may experience a high, most don't. The NICE guidelines, as described by Marina definitely say that it's NOT to be prescribed. Patients have to have tried other drugs and failed with them for some time bef...
  • derby42%s's Photo
    derby42 received a "Like".
  • Marina%s's Photo
    Marina replied to the topic "Medical marijuana strain for pain?" in General Discussion about MS.
    Sativex isn't illegal, it's a licensed pharmaceutical medicine on doctor's prescription only. However, it's very expensive, so it was frequently refused, and more recently NICE have stopped recommending it "because it is not a cost effective treatment". https://www.mstrust.org.uk/a-z/sativex-nabi...
  • Scully%s's Photo
    Scully replied to the topic "positives about having ms" in General Discussion about MS.
    Nope Derby, Kids will always need you no matter what age they reach. When they start having kids of their own, they need you all over again! Scully X
  • derby42%s's Photo
    derby42 received a "Like".
  • Carola%s's Photo
    Carola replied to the topic "Medical marijuana strain for pain?" in General Discussion about MS.
    Hi Derby, one question. Was your doctor okay about prescribing if it's illegal?
  • derby42%s's Photo
    derby42 replied to the topic "positives about having ms" in General Discussion about MS.
    I have really missed you all. Yes Sully they were very dark days and when I think back to them I feel rather unsettled. My baby was diagnosed with autism a few years ago and of course that was far worse for me than my ms diagnosis. He was 6 last week. He is currently non verbal but he's going gre...
  • derby42%s's Photo
    derby42 replied to the topic "Medical marijuana strain for pain?" in General Discussion about MS.
    Hi, I've been using Sativex for a long time for my curling toes and pain too. I only have one or two sprays a day as it does make me high. I am allowed 10. It's not supposed to cause this feeling but I am susceptible to drugs. I used to smoke it quite regularly as a rebellious youngster so I know...
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Thanks Scully. Defo worth a try I think. Thanks for the info. Lolly :-)
  • derby42%s's Photo
    derby42 replied to the topic "DLA/PIP Reassessment - An MP's View" in General Discussion about MS.
    I have to go for a work capability assessment thingy next week. Surely to God they could find all this out from G.p Ms nurse etc. I get really stressed when I go out. My hubby initiated the change from Income support to universal credit about 9 months ago and from then our finances have really su...
  • Scully%s's Photo
    Scully replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Hello Lolly, You do need them prescribed. Most pain stuff that is bought over the counter isn't very effective unfortunately. There a several different types. The ones I had needed changing about every 4 days, and you said I've them on a different area each day. From memory they are stuck onto...
  • LollyW%s's Photo
    LollyW received a "Like".
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Thank you Scully. Were the pain patches prescribed or could you buy them over the counter? I've not heard of these before. Did you find them effective before you became allergic? Thanks. Lolly :-)
  • Scully%s's Photo
    Scully replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    The nagging, constant dull aching is just the pits isn't it. There are some things out there. Amatriptyline, just taken at night time, or more correctly, 12 hours befor you plan to get up to avoid the 'hung over feeling' For a while, at the beginning, I used pain patches. Stick them on every cou...
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Thank you Scully. Good for you, your pain threshold must be a lot greater than mine. I'll stick to the co-codamol for now in the evenings. It takes the edge off. It's more the constant nagging that's so frustrating, not just the pain and discomfort. I'll look into the insurance. By all means I...
  • Scully%s's Photo
    Scully replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Here is an older discussion on Life Imsurance with links. http://ms-people.com/forum/forum/80-general-discussion-about-ms/
  • Scully%s's Photo
    Scully replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Hello Lolly, Never taken diazepam, even when pain was really rough, just didn't fancy the hardcore stuff to be honest. Don't worry about the L.P. It's a straightforward procedure. Just a tip, tried and tested. Before the LP drink s much coke-a-cola as you can. And also drink lots after...the fu...
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Morning, Sorry another question. Neither my husband nor I have any form of life insurance and we took out a mortgage last year. Thinking now we should do it quick before I get a diagnosis. Any advice on this would be much appreciated. Thanks guys. Lolly :-)
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Has anyone ever taken Diazepam for aching legs? I'm currently on Gabapentin and have been advised it's safe to take both together. Lolly :-)
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Lumbar puncture appointment is booked, 31st May. Eeek!!!!
  • Marina%s's Photo
    Marina received a "Like".
  • LollyW%s's Photo
    LollyW received a "Like".
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Thank you both for the informative replies. The "buzzing" sensation at the bottom of my spine I described to my Neurologist as an irritating sensation, feels like an itch I can't scratch. Makes me want to grit my teeth at times. He then wrote "buzzing sensation" in my notes. I've read about L'H...
  • Marina%s's Photo
    Marina replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Lolly, does the buzzing at the base of your spine occur when you bend your head forward so that your chin touches your chest? If so, that's what they call "L'Hermittes sign": https://www.mstrust.org.uk/a-z/lhermittes-sign Really achy legs, I have that too. It was one of my first symptoms when th...
  • Scully%s's Photo
    Scully received a "Like".
  • Scully%s's Photo
    Scully replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Hello Lolly, I get some of those symptoms you mention, Gabapentin may help more as you increase the dosage. Lots of us suffer with chronic pain. I get really achey legs and a sort of spongey feeling in my feet. Stiff ankles may be due to lots of things. Gentle, regular stretches also go a long...
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Hello, Just wondering if anyone suffers from a buzzing sensation in the base of the spine, really achy legs, aching feet and stiff ankles and if you have any advice on how to ease any of these symptoms? Any medication or suggestions. Like I said before, the Gabapentin appears to be helping wit...
  • Marina%s's Photo
    Marina replied to the topic "Medical marijuana strain for pain?" in General Discussion about MS.
    No, unfortunately, it's not (yet) legal for us, in any form (ie, medical). I believe, however, that "medical marijuana" is now available in Northern Ireland. It's legal in the US, as "medical marijuana", with special dispensaries for it, each of which can have a variety of strains and strengths....
  • Carola%s's Photo
    Carola replied to the topic "Medical marijuana strain for pain?" in General Discussion about MS.
    Think I can be quite objective as I taught in a prison and know all about the dangers of lots of different drugs. I've also tried cannabis in various forms to relieve aching legs and while I think it might have helped a bit, and I know some healthy people who love it, I've never had a "high" in...
  • Carola%s's Photo
    Carola replied to the topic "MS and serious falls." in General Discussion about MS.
    Thanks Pam. A long wait now before I get results.
  • Marina%s's Photo
    Marina received a "Like".
  • Carola%s's Photo
    Carola received a "Like".
  • Skippysprite%s's Photo
    Skippysprite replied to the topic "MS and serious falls." in General Discussion about MS.
    Hi Carola Welcome to the forum, sorry to hear about your pain, hopefully the Mri will shed some light on it. Pam x
  • Carola%s's Photo
    Carola replied to the topic "MS and serious falls." in General Discussion about MS.
    Thanks. Good link. I'm investigating iliopsoas tendonitis as the symptoms are very similar to mine. Might involve an op. to release the tendon. Will try and find out how major it is. Can't be as bad as hip replacement surely! So sorry for all you're going through. My pain isn't as bad but...
  • Carola%s's Photo
    Carola received a "Like".
  • LollyW%s's Photo
    LollyW received a "Like".
  • Marina%s's Photo
    Marina received a "Like".
  • Marina%s's Photo
    Marina replied to the topic "MS and serious falls." in General Discussion about MS.
    I haven’t fallen, haven’t had a hip replacement and am not in a wheelchair. However, I’ve had some excruciating pain in the hip, which was suspected to be a combination of hip bursitis together with piriformis syndrome and some form of tendonitis; it’s possible there was also some involvement in...
  • LollyW%s's Photo
    LollyW replied to the topic "MS and serious falls." in General Discussion about MS.
    Good luck with your MRI Carola :-) Lolly
  • Carola%s's Photo
    Carola replied to the topic "MS and serious falls." in General Discussion about MS.
    Thanks Scully, can't believe I'm wishing a did something simple like break a leg! MRI scan today.
  • Scully%s's Photo
    Scully replied to the topic "MS and serious falls." in General Discussion about MS.
    Hello Carola, Welcome to the forum So sorry to hear about your fall, dreadful bad luck for sure. I've fallen a couple of times, and broke my left, then the right wrist, thankfully all healed up now. You shouldn't have to suffer constant pain, have you asked your GP to refer you back to the c...
  • LollyW%s's Photo
    LollyW replied to the topic "FITBIT and MS" in General Discussion about MS.
    Brilliant, thanks for the info Scully :-) Lolly
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Thank you for the replies :-) Shame Gabapentin didn't work for you Marina. My burning sensations have really calmed down since I increased the dose. I noted on one of your posts Scully, you compared the burning sensation to sunburn. That's exactly how it feels for me especially when it flares up...
  • Carola%s's Photo
    Carola started a new topic "MS and serious falls." in Help using forum, Feedback, Wish List.
    I've been really unlucky lately and broke my femur after a fall. I'm a wheelchair user with MS so they've given me a half hip replacement called a hemiarthroplasty. 3 months on I have constant groin pain. I know it's unlikely but I wondered if there's anyone else with MS who has had a hip repl...
    • Skippysprite
      Hi Carola

      Welcome to the forum, sorry to hear about your pain, hopefully the Mri will shed some light on it.

      Pam x
    • Carola
      Thanks Pam. A long wait now before I get results.
  • Carola%s's Photo
    Carola registered as a new member.
  • traceytwink%s's Photo
    traceytwink registered as a new member.
  • Marina%s's Photo
    Marina replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    I have heard of MSers gaining weight with gabapentin. Here’s one of several topics mentioning it on this forum: http://ms-people.com/forum/topic/15055-weight-gain-with-gabapentin/ I took gabapentin for a few weeks quite a few years ago and don’t remember putting on weight with it. I was on a ver...
  • Scully%s's Photo
    Scully replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Hello Lolly, Am pleased that you have had a good discussion with your employer. You are both aware of what's going on so it helps. Sounds like a good plan you have hatched between you without the added pressure on you. As well as occupying your mind. The Gabapentin may well be helping you out...
  • Scully%s's Photo
    Scully replied to the topic "FITBIT and MS" in General Discussion about MS.
    Hello Lolly, I've found my Fitbit invaluable if I'm honest. I got the 'charge 2' as recommended by my daughter. 10,000 steps a day is way beyond me. Even my GP said that he couldn't do 10,000 steps. I set mine to 5,000 a day and that seems to be working ok. I don't manage every day of course, b...


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