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    • #20743
      Rosalind
      Participant

      Hi there –  thanks,  you guys are amazing. i have learnt so much.

      1. Is there anyone else that has cognitive only MS,  and no motor involvement (despite )decades of it ?  Would love to find someone facing the same experiences. …

      2. I get  what I call brain sieze/freeze ,  and if  strong it is followed by vertigo where the world tilts  at an angle then tilts back again . Have to shut my eyes and drop to the ground – it is so diorientating – like in an  Earthquake – anyone have any idea /similar expereinces ?

      Thanks

      Rosalind

       

       

       

    • #20745
      Ed Tobias
      Keymaster

      I’m the opposite, Rosalind. I’ve had MS for over 40 years and 99% of my symptoms are physical, rather than cognitive.

      Do your brain MRIs show active or an increasing number of lesions? Is there any brain atrophy? Are you being treated with a DMT for your cognitive problems?

      Ed

    • #20748
      Rosalind
      Participant

      thanks Ed,  Oh wow you are indeed the complete opposite – what a rough time you must have had/be having . I am so lucky. Seems like have had MS since 21  ( Optic Neuritis but treated within 24 hours with steroids, never told it could lead to MS)   but despite lots of symptoms   for 45 years  they were not  being taken  seriously /diagnosed until finally an   opportunistic MRI,  showed extensive confluent white matter lesions, mostly on RS parietal and temporal areas , just a few in left,  cortical gray matter atrophy  – 3 percentile )  stable – been there for a long time so I have been so lucky in that the brain has had time to rewire and repair itself – amazing what it can do . Had recent relapse for 4 months but was out in isolated places  saw two GPs  at different stages  but now realise should have gone to a hospital, but   I knew how to look after myself and being away from people,  in nature and walking  etc is medicine in itself. I have at last managed to get myself back to where I was before –  whew as did not think that would be possible . I am not  not  being medically  treated. Still waiting to see  my neurologist …  i gather these latest symptoms are unusual so  I am  trying  see if any one has any ideas or similar experience.  If another  MRI could be done I am pretty sure it would now show new lesions.  Thanks will defintley ask about DMT . Had no real idea of what was what re treatment   and people’s experiences which  is why these forums and articles  are  so great.  Have  read heaps of evidence based books and research articles  on  MS, the brain, chronic diseases and life style changes  … and adopting these has made a huge difference.

      Thanks Ed

      Rosalind

       

       

       

    • #20755
      Ed Tobias
      Keymaster

      Rosalind,

      Nah, I really don’t think I’ve had a hard time. I worked full-time in the news media until retiring a few months after I turned 64. It was an opportunity to meet a lot of interesting people and travel to a lot of interesting places. I’ve been married for almost 45 years and we have a couple of great grandkids (aren’t they all great?). I’ve never thought of myself as disabled, even after I started using a scooter most of the time. As crazy as it sounds, it just sounds natural.

      Since you’re an MS book reader, I’m shamelessly going to suggest you have a look at mine: “We’re Not Drunk, We Have MS.” It’s available on Amazon (paperback or ebook), Apple Books and several other ebook stores. If you read it I’d be interested in your comments, good or bad.

      Ed

    • #20756
      Rosalind
      Participant

      I love your attitude, no wonder you have  accomplished so much and seen so much. I  retired at 59 becasue I realised I was no longer  able to analyse, think ,  plan, decide at my usual level. Had no idea what was wrong but  its given me so much time to enjoy things too. Travelling and tramping here in nz and overseas. Will definetley look out your book – wonerful you have written it. Love the title. very apt as on  my last relapse when I was camping and travelling I got episodes of  drunk feeling and stumbled a bit etc.  Good on you , Thanks Rosalind

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