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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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  • Nick%s's Photo
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  • Nick%s's Photo
    Nick replied to the topic "Expanded disability status scale (EDSS)" in General Discussion about MS.
    During a two year drug trail period, specifically looking at 'mobility' I was regually assesed for EDSS. During this time I had to have independent values across 3 neurologists for the EDSS . Generally speaking the value at a given time was vary similarly agreed. However I would point out that...
  • Marina%s's Photo
    Marina received a "Like".
  • Marina%s's Photo
    Marina replied to the topic "Expanded disability status scale (EDSS)" in General Discussion about MS.
    In case anybody’s wondering, the online ClinicSpeak EDSS calculator was developed by the highly respected Prof Giovannoni of the MS Research/BartsMS Blog. Multiple Sclerosis Research: ClinicSpeak: finally the webEDSS goes live http://multiple-sclerosis-research.blogspot.com/2015/12/clinicspeak-f...
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    Nindancer received a "Like".
  • Scully%s's Photo
    Scully replied to the topic "Pregnancy" in General Discussion about MS.
    Hello, You do need to see your GP or MS Nurse as a matter of urgency. As stumbler says, the drugs you are on may need to be stopped, whatever you decide to do about the pregnancy, for your own health and peace of mind. Have you spoken to anybody yet? Scully
  • Scully%s's Photo
    Scully replied to the topic "Expanded disability status scale (EDSS)" in General Discussion about MS.
    Hello drrabbit, and welcome. Sorry to be late to the party as it were... It seems very strange to me that this scale varies so much between consultants, hospitals...in fact, everybody it seems. I accept that in part the EDS scale is down, in part, to some interpretation, nevertheless, should it n...
  • drrabbit%s's Photo
    drrabbit replied to the topic "Expanded disability status scale (EDSS)" in General Discussion about MS.
    4 according to that, 0 according to local services
  • N666HTY%s's Photo
    N666HTY received a "Like".
  • Stumbler%s's Photo
    Stumbler received a "Like".
  • Nindancer%s's Photo
    Nindancer replied to the topic "Expanded disability status scale (EDSS)" in General Discussion about MS.
    Here's a DIY check that was recommended to me by a hospital: https://edss.clinicspeak.com/#/welcome Sonia x
  • Marina%s's Photo
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  • Stumbler%s's Photo
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    Stumbler received a "Like".
  • Stumbler%s's Photo
    Stumbler replied to the topic "Pregnancy" in General Discussion about MS.
    You're not the first and you won't be the last. You should stop taking the Plegridy now, just whilst you decide what you should do next. You could give the MS Society Helpline a call (0808 800 8000) for specific advice. Also, give your MS Nurse a call, just to keep them in the picture. Hope th...
  • N666HTY%s's Photo
    N666HTY started a new topic "Pregnancy" in General Discussion about MS.
    Erm... just done a test and not the best news for me. Unplanned and singĺe! No idea as to what i might do. Anyone been in this situation? Im 38 in a few weeks already have 2 boys aged 11 and 19. Was diagnosed in 2015 with RR MS. i take plegridy. Im in shock and worried and scared and dont no w...
    • Stumbler
      You're not the first and you won't be the last.

      You should stop taking the Plegridy now, just whilst you decide what you should do next.

      You could give the MS Society Helpline a call (0808 800 8000) for specific advice. Also, give your MS Nurse a call, just to keep them in the picture.

      Hope this helps.

      :moonieman:
    • Scully
      Hello,

      You do need to see your GP or MS Nurse as a matter of urgency. As stumbler says, the drugs you are on may need to be stopped, whatever you decide to do about the pregnancy, for your own health and peace of mind.

      Have you spoken to anybody yet?

      Scully
  • N666HTY%s's Photo
    N666HTY received a "Like".
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    Scully received a "Like".
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    N666HTY replied to the topic "Hi new to the group" in General Discussion about MS.
    Thank you all so much for your comments. Im a member of the MS Society local group. Think its about time i went along. Thanks guys
  • Scully%s's Photo
    Scully received a "Like".
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    Scully replied to the topic "Hi new to the group" in General Discussion about MS.
    Hello Leanne, and welcome to our group here. There is lots of information under the various headings about MS. There are also lots of people here, with first hand knowledge of MS. Most of us went through the stage of denial at some point, which makes dealing with relapses even harder to cope wi...
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    Nindancer received a "Like".
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    N666HTY received a "Like".
  • Scully%s's Photo
    Scully replied to the topic "Didn't know where else to post...." in General Discussion about MS.
    Hello. I get copy letters between the hospitals and the GP. I think most hospitals do this. Is yours addressed to you personall, or addressed to the GP and you ar copied in perhaps? Either way, expecting it or not, it can be a little un-nerving. Your consultant may have referred you on to an MS S...
  • Marina%s's Photo
    Marina received a "Like".
  • drrabbit%s's Photo
    drrabbit received a "Like".
  • Marina%s's Photo
    Marina received a "Like".
  • Marina%s's Photo
    Marina received a "Like".
  • Marina%s's Photo
    Marina received a "Like".
  • drrabbit%s's Photo
    drrabbit replied to the topic "Expanded disability status scale (EDSS)" in General Discussion about MS.
    What isn't clear from the mstrust page is what happens if mobility is limited by fatigue. It doesn't say pretend they are fully mobile, yet this is what seems to be happening locally. A major problem with scales used in medical practice is that different individual health professionals will app...
  • Marina%s's Photo
    Marina replied to the topic "Expanded disability status scale (EDSS)" in General Discussion about MS.
    Welcome, although I'm sorry to hear your wife's been diagnosed with MS... There are also no stupid questions, especially when it comes to MS. By the sound of it, you’ve already seen how EDSS is measured? https://www.mstrust.org.uk/a-z/expanded-disability-status-scale-edss It would seem fatigue...
  • drrabbit%s's Photo
    drrabbit started a new topic "Expanded disability status scale (EDSS)" in General Discussion about MS.
    Hi I'm new here and sorry to ask a potentially stupid question. My wife was recently diagnosed with RRMS. As part of the work up her EDSS has been recorded in the notes and in letters. Because of her fatigue she rarely can manage 500m walking. There are some concentration issues and word fin...
    • Marina
      In case anybody’s wondering, the online ClinicSpeak EDSS calculator was developed by the highly respected Prof Giovannoni of the MS Research/BartsMS Blog.

      Multiple Sclerosis Research: ClinicSpeak: finally the webEDSS goes live
      http://multiple-sclerosis-research.blogspot.com/2015/12/clinicspeak-finally-webedss-goes-live.html

      Multiple Sclerosis Research: ClinicSpeak: what is the EDSS?
      http://multiple-sclerosis-research.blogspot.com/2013/08/clinic-speak-what-is-edss.html

      I haven’t tried the online tool yet, but my neuro (an MS researcher) said my EDSS was 6, which I guess was based on my needing a stick (which I only use when out and about) and that I can’t walk more than 100m without “resting” (mostly due to pain).

      From EDSS 6 upwards, it’s based purely on walking ability and whether you need an aid or not to walk. As the Prof says: “EDSS steps 1.0 to 4.5 refer to MSer who are able to walk without an aid and is based on measures of impairment using 7 functional systems (FS).”

      He also says: “Although an EDSS of 0 (zero) is 'normal' you can still have neurological impairments detected using more sensitive tests, for example cognitive impairments.”

      If you put “EDSS” into the small search box on the left, you’ll find numerous articles on EDSS, eg: http://multiple-sclerosis-research.blogspot.com/search?q=edss
    • Nick
      During a two year drug trail period, specifically looking at 'mobility' I was regually assesed for EDSS. During this time I had to have independent values across 3 neurologists for the EDSS . Generally speaking the value at a given time was vary similarly agreed. However I would point out that over time the value changed, both up and down, with a slow deterioration over the two year period. When first diagnosed ten years ago I was 4.5, today the value changes between 6 and 6.5. I can't see how you could integrate this method of assessment into anything like the current DWP PIP methods. Those are completely unscientific, unlike EDSS.
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  • Marina%s's Photo
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  • Marina%s's Photo
    Marina replied to the topic "sativex spray" in General Discussion about MS.
    I wouldn’t touch it with a bargepole. It’s a one-page website with no contact details other than a mobile number. No company name, no other name. You’ve therefore no idea who you’re buying from or dealing with. There is not one iota of evidence to show who they are or that their Sativex is even t...
  • steven jackson%s's Photo
    steven jackson started a new topic "sativex spray" in General Discussion about MS.
    hi new here can anyone tell me if they have brought sativex spray from this site please? www.sativexspray.co.uk
    • Marina
      I wouldn’t touch it with a bargepole. It’s a one-page website with no contact details other than a mobile number. No company name, no other name. You’ve therefore no idea who you’re buying from or dealing with. There is not one iota of evidence to show who they are or that their Sativex is even the genuine thing. Even if their Sativex was the real thing, one has to ask oneself how come they can get hold of it and sell it without prescription (at any price). All of that makes their promise of a money-back guarantee worthless.

      It sounds too dodgy to me.
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  • Eastendgirl%s's Photo
    Eastendgirl replied to the topic "Didn't know where else to post...." in General Discussion about MS.
    Well I've had another letter confirming that Neurologist has referred me to a colleague - not quite sure what that's all about, but I guess I'll find out in due course. I tried asking the appointments people if I could get an appointment with this new guy sooner rather than later as I've had add...
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