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The MS PEOPLE UK Forum
Support, help, advice & information for Multiple Sclerosis. Ask questions & share experiences with people affected by MS.

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  • Marina%s's Photo
    Marina replied to the topic "Severe back spasm when standing" in General Discussion about MS.
    Yes, I do. I've been on it since shortly after my DX, about 11 years now. I take the 3mg capsules. It hasn't helped my back problems at all though, although everybody's different in what benefits or symptom relief they get from it.
  • Alisonne%s's Photo
    Alisonne replied to the topic "Severe back spasm when standing" in General Discussion about MS.
    Hello all, Does anyone have any experience taking LDN? ? Thanks Alisonne
  • Nick%s's Photo
    Nick replied to the topic "positives about having ms" in General Discussion about MS.
    Hi Derby What a great post! Its really good to hear from you again and to see all that positivity!!! Nick
  • Scully%s's Photo
    Scully received a "Like".
  • Scully%s's Photo
    Scully replied to the topic "positives about having ms" in General Discussion about MS.
    Hello Derby! So pleased to see you here again, and even more pleased to hear you so positive and getting on with loads of stuff! Well done Derby. It's great to hear that you are doing so well. It just goes to show that even after initial diagnosis and all those dark days and months you suffere...
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  • Softsqueezy%s's Photo
    Softsqueezy started a new topic "Anyone for TENs" in General Discussion about MS.
    like many I suffer with excruciating pain.. mostly in my lower legs to the point I think I'll go out of my mind.. thankfully I do get the odd half an hour when the pain gets less.. so thats when the TENs machine comes out! I apply TENs pads on my calfs top and bottom for about 45 mins.. 3 x 15 mi...
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  • Nick%s's Photo
    Nick replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    It's great that you have a supportive boss!! It's good advice to take as much time as you need. We can't stress enough about how being stressed out is bad for neurological conditions. It is also good that you have a GP who simply has time for you!! Don't rush, it all takes time. Nick
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Thanks Nick :-) I'm actually seeing my gp on Wednesday morning as I'm currently signed off work. Certificate ends on Wednesday and I'm due to go back to work, but I'm not sure I feel ready. My boss has been really supportive and said take as much time as I need and to please consider coming back...
  • Nick%s's Photo
    Nick replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Hi Lolly, Glad it all went OK. Sounds like you are having lots of support from your GP. It all helps but there can sometimes be a bit of a 'lag' in communications between hospitals and GP's. Don't worry all this will sort itself out and you can now see just how complex these decisions on 'dia...
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Morning Scully, Yeah that's it. No point fretting. I keep telling myself we will hopefully find out a bit more on Friday but don't expect a conclusive diagnosis. If I get one then it's a bonus, at least then I can get the right help and treatment etc. My husband will be with me at my appointment...
  • Scully%s's Photo
    Scully replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Morning Lolly, So pleased it went as well as it could have. If the MRI hasn't been technically reviewed I think the Neurologist may well have access to it, so may be able to draw some conclusions for you. Try and relax now till Friday, easier said than done I know, but there is nothing to be g...
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    So... MRI on spine done and dusted. Took around 40 minutes. I was quite surprised when I got there to find a mobile MRI scanner unit outside the clinic. The staff were very friendly and reassuring and even provided an eye mask so I could comfortably close my eyes. I was so relieved when it was do...
  • derby42%s's Photo
    derby42 replied to the topic "anyone else felt this way" in General Discussion about MS.
    Hi there, I was dx nearly 6 years ago and it hit me very hard. I had a baby of 2 months old and another one of one year old. I took to my bed for months. Like you, I walked excercised worked socialised a lot but I went downhill very quickly then it was wheelchairs scooters I lost my job and at th...
  • derby42%s's Photo
    derby42 replied to the topic "positives about having ms" in General Discussion about MS.
    I also lost my job after 20+ years, I havent driven since diagnosis and spend most of my time on a sofa. BUT . . I have 3 kids and I have lots of time to keep them organised ( appointments, homework, planning trips etc) I shop a lot mostly for my kids and my home, I have 2 dogs, a car that my h...
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Thanks guys. Always so informative and reassuring :-) I am silly sometimes. I think I have over thought it and got myself into a bit of a panic because I struggled with the confined space with my brain MRI. I also had a bad panic attack recently because of the severity of my head burn and dizzin...
  • Nick%s's Photo
    Nick received a "Like".
  • Nick%s's Photo
    Nick replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Lolly, I agree with Scully, there is no difference between the brain and spine MRI, It sounds a long time but I find that as they do the different 'scans' , each one not taking very long, the technical person, talks to let you know what is happening and the time goes pretty quickly. As Scully...
  • Scully%s's Photo
    Scully replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Hello Lolly, The spine MRI shouldn't be any different from your brain MRI, just takes a little longer is all. I've not gone down the sedative route so I can't really offer any advice, but I think others have had sedatives from the GP? Just try and relax. I found it easier to close my eyes and l...
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Thanks for your posts. I'm getting a bit anxious about my spine MRI tomorrow. I have read on another forum about taking a sedative before the scan. Is this still an option for me or should I have requested it sooner to my gp? Lolly
  • Scully%s's Photo
    Scully replied to the topic "Severe back spasm when standing" in General Discussion about MS.
    Hello Allisone, Yes Baclofen can cause those side effects. However, after a fortnight or so those 'away with the fairies ' feelings do wear off and it gets on with the business of relaxing the muscles. I had the same with Gabapentin and later Pregalin, for the first couple of weeks I almost did...
  • Marina%s's Photo
    Marina replied to the topic "Severe back spasm when standing" in General Discussion about MS.
    What a co-incidence, Alisonne! I was a trained dancer too, although I didn't get to be as professional as I'd hoped due to a chronic inflammation of my knee ligaments early on. Unfortunately, my back pain is now so bad that any exercise, or indeed just normal everyday movements like bending dow...
  • Alisonne%s's Photo
    Alisonne replied to the topic "Severe back spasm when standing" in General Discussion about MS.
    Thank you both for the very detailed replies. I'm pretty certain this horrible back pain has roots in something other than my MS.......I'm an ex professional dancer with a long history of back problems. This conversation has prompted me into researching stretches and exercises for lumbar stenosis...
  • Scully%s's Photo
    Scully replied to the topic "Severe back spasm when standing" in General Discussion about MS.
    Hello Allisonne and welcome from me too. Thankfully I don't have the back pain you describe, sounds awful. I do have leg pain, if standing or walking for any length of time, but I'm sure this is just the MS. I take Baclofen for muscle spasms which does help to a degree with mobility. I attend a...
  • Marina%s's Photo
    Marina received a "Like".
  • Marina%s's Photo
    Marina replied to the topic "Severe back spasm when standing" in General Discussion about MS.
    I had sciatica and back pain before my stenosis was first seen in an x-ray years and years ago (before MS was even considered). I went to various back specialists after that, had more x-rays, but none of the specialists paid any attention to that first x-ray, they could only see my disc problems,...
  • Alisonne%s's Photo
    Alisonne replied to the topic "Severe back spasm when standing" in General Discussion about MS.
    Hi Marina, Funnily enough, I was convinced I had spinal stenosis back in the early days of becoming ill. I've had 2 full MRIs in the course of my MS investigations - would stenosis show? Over the past 7 years I've seen five physics, all sympathetic but basically unable to help. But you have set...
  • Marina%s's Photo
    Marina received a "Like".
  • Marina%s's Photo
    Marina replied to the topic "Severe back spasm when standing" in General Discussion about MS.
    Hi Alisonne and welcome! Back pain is something I live with permanently. I can’t stand on the spot for more than a minute or two without getting really acute sciatica. I can also get very sharp lumbar back pains, more so if I have to bend or twist. Sitting down usually helps to relieve it. Bot...
  • Alisonne%s's Photo
    Alisonne started a new topic "Severe back spasm when standing" in General Discussion about MS.
    The worse thing now is the spasms of back pain I experience when standing for any longer than a couple of minutes. These disappear the moment I sit down. Has anyone any experience of this or any idea why it happens and what I can do about it? Thank you!
    • Alisonne
      Hello all,

      Does anyone have any experience taking LDN? ?

      Thanks
      Alisonne
    • Marina
      Yes, I do. I've been on it since shortly after my DX, about 11 years now. I take the 3mg capsules. It hasn't helped my back problems at all though, although everybody's different in what benefits or symptom relief they get from it.
  • Alisonne%s's Photo
    Alisonne registered as a new member.
  • Nick%s's Photo
    Nick received a "Like".
  • Scully%s's Photo
    Scully received a "Like".
  • Nick%s's Photo
    Nick replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Hi Lolly, A full scan of both brain and spine takes about 45 minutes. So it should be a bit less than that, say around 30 minutes. I've had these quite a few times and it's really not to bad. My own initial diagnosis was done and dusted in around two months, so you can see the difference for dif...
  • Scully%s's Photo
    Scully replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Morning Lolly, You poor thing. Leg pain is something that I suffer from, always have. I used to be on Gabapentin and it worked for years, but eventually, I'd got to almost the top of the dose, so switched to Pregabalin. I also take Baclofen, which is a muscle relaxant. Both these drugs make me...
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Thank you both again for your replies. They are both informative and offer comfort in knowing I'm not alone with all this. Yesterday I heard back from my neurologist's secretary. They have offered me an appointment next Friday, which works out well as I have my spine MRI this Sunday so we shoul...
  • Scully%s's Photo
    Scully replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Hello Lolly, Yup, the waiting is definitely the hardest thing to cope with. When I look back and see others struggling with the wait, I do wonder how on Earth I got through it. I was just over a year before they finally agreed. Some cases take way longer, but most can show up fairly quickly afte...
  • Nick%s's Photo
    Nick replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    The main tests as are mentioned, i.e. MRI and lumber puncture, they may also do 'evoked potentials' test see here: https://www.mstrust.org.uk/a-z/evoked-potentials Nick
  • LollyW%s's Photo
    LollyW replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Thank you so much for your replies Nick and Scully. The info you have given is really helpful and much appreciated. I'm pleased to say I've had a good couple of days over easter where my symptoms have been pretty light. I have doubled my Gabapentin in take so maybe that is playing a part in it....
  • 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, Nick has pretty much said it all, on that MS is hard to diagnose without all the specific tests they need to do. Do not frighten yourself with 'Dr. Google ' and self diagnosing with all sorts of nightmares. I think we've all done it at some point. It's pointless worrying about som...
  • Nick%s's Photo
    Nick received a "Like".
  • guzlover%s's Photo
    guzlover registered as a new member.
  • Nick%s's Photo
    Nick replied to the topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Hi LollyW, Welcome to the forum. Its a bit quiet around here just now but you will get some good answers. There is no easy way to determine exactly where your problems lie. Burning sensations and weaknesses are all symptoms you can get with MS, however MS is often difficult to clearly diagnose...
  • LollyW%s's Photo
    LollyW started a new topic "Help! Anyone else have these symptoms?" in General Discussion about MS.
    Hi everyone. I have just joined the forum in the hope that I get some help and advice from others that share similar symptoms to me. I have been suffering from neurological symptoms for 4 weeks now and am currently undergoing tests and am under the care of a neurologist. I have been told it's lo...
    • LollyW
      Thanks Nick :-)

      I'm actually seeing my gp on Wednesday morning as I'm currently signed off work. Certificate ends on Wednesday and I'm due to go back to work, but I'm not sure I feel ready. My boss has been really supportive and said take as much time as I need and to please consider coming back at reduced hours. I'll have to discuss this with my gp on Wednesday. Thankfully the antibiotics seem to have finally kicked in so the tonsillitis is getting better. The burning sensation in my head and body is still quite strong at times which is putting me off going back to work. As is the worry of not knowing what's wrong with me. Not sure what to do.

      I'm guessing I can check with my gp on Wednesday if my MRI results are back in preparation for the Neurologist on Friday.

      Lolly
    • Nick
      It's great that you have a supportive boss!! It's good advice to take as much time as you need. We can't stress enough about how being stressed out is bad for neurological conditions. It is also good that you have a GP who simply has time for you!!

      Don't rush, it all takes time.

      Nick


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