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pollyanna1052
Online Community Member Posts: 2,015 Championing
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!
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!
2
Comments
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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,
Vicki0 -
Good luck @pollyanna1052! I agree time for a second opinion. Keep us posted.0
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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.0
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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.0 -
My GP was happy to refer me. He made an appointment there and then for me. 6th November. That`s quick eh?0
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