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new diagnosis

pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
Hello gang!
I couldn't get my news to you sooner, as somehow I got myself locked out of the site...but all fixed now.

Well, have I got news for you!

I went into The Walton Centre specialist hospital for neurosciences, in Liverpool, on 15th Dec for tests. I was in fpr 6 days. What a fabulous bunch of folk they ALL are. Liverpudlians are great people.

Just a quick re-cap (boring)...
in 1998 I had PPMS symptoms (Primary progressive MS), but endless tests over some years never proved anything. In 2003 it was assumed I had PPMS.
In 2011 MS was quashed in favour of HSP..hereditary spastic paraplegia. I was mortified to think I could pass such a horrible, crippling disease down to my children and grandchildren.

In about 2013 a genetic test came back negative, so HSP was put of the picture and I was left bewildered, with a big, fat ? on my head.

So, my daughter is private secretary to a neurologist at The Walton and she got me in to see him. He was sure there was a spinal cord problem and wanted me in for tests.

So I now have a frim diagnosis of...SPINAL MS.

That`s an odd one as very few people who heard of it. I am only the 2nd case my consultant has ever seen!

I`ve emailed the MSUK Society and they didn't know of it either....BUT they have found lots of info for me and have asked if my consultant will contact them.

Ground breaking stuff eh?

I am delighted with my Christmas pressie!

Happy Christmas each and all.
xxxxx

Replies

  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Aw @pollyanna1052! I'm so glad you were finally able to get some answers! Merry Christmas to you! 
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  • FranstrahanFranstrahan Member Posts: 898 Pioneering
    @pollyanna1052
    Ain't it great to finally know, and I guess a bit of a bragging bonus to have something so rare! Best of all, you havent passed it on to your kids and grandkids. 

    A Very Merry Christmas to You and All Yours xx

    Love Fran
  • chiariedschiarieds Community champion Posts: 6,896 Disability Gamechanger
    Hi @pollyanna1052 - Delighted to read you 'finally' have a firm diagnosis, & I'm pleased everyone at The Walton Centre was so good. My next door neighbour is a Liverpudlian & says what great people they are!
    Wishing you & your family a Merry Christmas & a Happy New Year.
  • CressidaCressida Member Posts: 683 Pioneering
    @pollyanna1052 must be a weight off your mind. I cannot imagine waiting so long for a diagnosis. Nice to see you posting again. I did wonder how you were getting on. 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello  @pollyanna1052   Good to hear from you. Hope every thing works out for you.

    Please if I can help or you need  any support please ask.

    Always a pleasure best wishes take care

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
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  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Just to clarify after reading MS info. I have Primary progressive spinal MS.  Gobful innit? Xx
  • deb74deb74 Member Posts: 683 Pioneering
    Hi @pollyanna1052. I am going to see my doctor in January to have more tests but it looks like I have ms! it will be a relief to finally find out what is going on. I have joined the ms society forum and have learned a lot about ms. 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @pollyanna1052   please have a look at this organisation .

    Deals with every thing to do with the spine including injuries.

    Went on line see what else there is. For you.

    https://www.spinal.co.uk.

    Please if I can advise another one with any new diagnosis can be some effecting of mental health.

    Know this my self, from my own health history.

    Mis diagnosing can be stressful, cause some mental health issues.

    Please can help with anything to support you regarding the mental health issues.

    Please ask me you not alone ever.

    I do understand this could be worth speaking to your Community Health Unit who runs their wellbeing service.

    Looking at diet, nutrition often important in maintaining health and anything you should be looking at .

    As a recipe king, foodie, plus anything diets, nutrition please ask me any thing your concerned with or need to know if I can answer.

    Be supportive happy to do so.

    Please take care.

    @thespiceman

    .

     


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    deb74 said:
    Hi @pollyanna1052. I am going to see my doctor in January to have more tests but it looks like I have ms! it will be a relief to finally find out what is going on. I have joined the ms society forum and have learned a lot about ms. 
    How long have you been searching for a diagnosis?  X
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Hello @pollyanna1052   please have a look at this organisation .

    Deals with every thing to do with the spine including injuries.

    Went on line see what else there is. For you.

    https://www.spinal.co.uk.

    Please if I can advise another one with any new diagnosis can be some effecting of mental health.

    Know this my self, from my own health history.

    Mis diagnosing can be stressful, cause some mental health issues.

    Please can help with anything to support you regarding the mental health issues.

    Please ask me you not alone ever.

    I do understand this could be worth speaking to your Community Health Unit who runs their wellbeing service.

    Looking at diet, nutrition often important in maintaining health and anything you should be looking at .

    As a recipe king, foodie, plus anything diets, nutrition please ask me any thing your concerned with or need to know if I can answer.

    Be supportive happy to do so.

    Please take care.

    @thespiceman

    .

     



    Hi Spiceman, thankyou for your replies.

    If anything having the diagnosis has helped my anxiety issues.

    I was so upset about having a genetic condition and then having it changed, has reduced my worries enormously!

    I`m fine mentally and have accepted the new diagnosis. It feels so much better to be assured.

    Thankyouxx
  • deb74deb74 Member Posts: 683 Pioneering
    Hi @ pollyanna1052. Sorry I have only just seen your comment about my diagnosis. I first went to see my dr in May but things haver gradually got worse since then.
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Hi Debs what type of ms have you got?
  • deb74deb74 Member Posts: 683 Pioneering
    Hi pollyanna1052. I have got RRMS. Fun and games because you never Know what it is going to throw at you! 
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    need to know indeed! Thanks for your kind words. xx
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