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new opinion
pollyanna1052
Member Posts: 2,031 Disability Gamechanger
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!
Replies
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
Scope community team
Scope
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.