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new diagnosis
pollyanna1052
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
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
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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
Please if I can help or you need any support please ask.
Always a pleasure best wishes take care
@thespiceman
SCOPE Volunteer Award Engaging Communities 2019
Mental Health advice, guidance and information to all members
Nutrition, Diet, Wellbeing, Addiction.
Recipes
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
.
SCOPE Volunteer Award Engaging Communities 2019
Mental Health advice, guidance and information to all members
Nutrition, Diet, Wellbeing, Addiction.
Recipes
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