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pollyanna1052
pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hi, this could be a long story, but I`ll try to shorten it...after all it has been 20 years!
When I was 45/46 I began falling..my left leg felt like wood..then I had foot drop and stiffness in my legs and spasms in my arms. 

My bladder and bowels were very unpredictable. I had supra pubic catheter fitted.

I was diagnosed with Primary Progressive MS. Within a very short time I became a wheelchair user....

10 yeas later, the MS diagnosis was exchanged to Hereditary Spastic Paraplegia

A few years later I had a genetic test, which was negative. So my HSP label was changed to a big fat ?

I saw 16 neurologists in as many years. No-one could diagnose me!

2 years ago, I was discharged from the neuro department.

I had to accept and just get on with it.

Last week I was given a new chance at being diagnosed.

I`m hoping to get a referral to The Walton Centre in Liverpool. It is the only neuroscience hospital in UK, with top professors and doctors.

Maybe I will get that elusive diagnosis, eh? I am not expecting miracles!


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  • Vixster89
    Vixster89 Community member Posts: 9 Connected
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    Hi @pollyanna1052

    That's quite a journey you've been on! I've also been down the 'diagnosed then taken away' route. It's not easy but fingers crossed you get the correct diagnosis and *hopefully* treatment that will help improve your symptoms. Please let me know how you get on if you get your referral!

    Good luck,

    Vicki
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  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
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    Good luck @pollyanna1052! I agree time for a second opinion. Keep us posted. 
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  • Adrian_Scope
    Adrian_Scope Posts: 10,938 Scope online community team
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    Fingers crossed for you @pollyanna1052. I hope you get the referral you want and that they're able to finally get to the bottom of things. 
    Community Manager
    Scope
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  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
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    Hi all.
    Well what about this!
    I`ve been disabled for 20 years and was discharged from Halifax neurology 2 years ago. No-one could find out what caused my condition or what it`s called.
    Result....ZILCH!

    I am unable to walk or stand or do most of my own personal care.

    I`ve just got a referral to The Walton Centre in Liverpool. It is a centre of excellence in neuroscience.

    I`m going to be looked at again. I`m not expecting a miracle, but just a diagnosis would be good.
    The appointment is 6th |Nov....isnt that quick. My GP arranged it. Fingers crossed.
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  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
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    My GP was happy to refer me. He made an appointment there and then for me. 6th November. That`s quick eh?
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
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    Hi @pollyanna1052, I really hope the appointment is beneficial and that you can get some answers! :) 
    Scope

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