new investigations

pollyanna1052

After 20 years of having serious mobility issues I am going into hospital for tests.

I was told I had PPMS in 2003......in 2011 I was told it was HSP.......a few years after that HSP was found to be highly unlikely after genetic testing.

I`m going into The Walton Centre in Liverpool. It is the only centre for neurosciences in UK and is a Centre of Excellence.

They have more accurate MRI scanning.

I might be getting that elusive correct diagnosis at last. Fingers crossed!

Chloe_Alumni

I hope so @pollyanna1052 we've all got our fingers crossed!

pollyanna1052

I`ve had a copy of a letter which the consultant sent to my GP following Tuesday`s appointment. It is incredible reading!
he recaps the meeting bullet points and then goes on to say what could be the cause of my paraplegia....there are other things too. But I believe he will be testing me for the following in among.....brace yourself.......

copper deficiency
vitamin E deficiency....both can cause rare metabolic myleopathies

spinal dural AV fistula.......this is when veins and arteries meet which don't usually connect and cause abnormality to motor nerves (I think!)

immune disorders like NMO

genetic causes like certain rare leukodystrophies

hereditary spastic paraplegia.


There you go! One thing`s for sure...I am certainly a rarity!

I will be going into the Walton for a few days at some point. Hopefully, before Christmas.

Hey-ho guys! xxxx

Adrian_Scope

I’m glad they’re having a proper look @pollyanna1052. Good luck and I hope you get some answers soon! 

Chloe_Alumni

Very best of luck @pollyanna1052, I hope they have an answer for you.

pollyanna1052

Got my date....15th Dec for 3 days.......oooeerrr....a mini holiday!
Thanks.xxxx

Chloe_Alumni

Really hope it goes well @pollyanna1052! 

pollyanna1052

I have posted a follow up of what happened recently. It`s in Coffee Lounge.
Best wishes to all xxx