Diagnosis at last

[Chris020485]

Hi, does anybody suffer or knows anyone who suffers from the hereditary spastic ataxia at all?

[peterallison]

thats the condition I have, why its called hereditary, makes me wonder, as no body in the family has come across it

[Chris020485 in reply to peterallison]

Yes same here, did your condition come on at an early age? Mine come on at around 26 years old I'm now 32

[peterallison in reply to Chris020485]

I have had no illness, all my life, apart from the odd bought of flu/cold, and am 57 now. My condition was "kickstarted" by a TIA in 2010, and has got worse, over the intervening years. But its just one of those things, I lost my mum at 48, and my dad who is now 85/86, has had 4 big heart attacks, and bladder cancer, so in the grand scheme of family history, I am kind of fortunate, and just work thru any personal difficulties

[Chris020485 in reply to peterallison]

That sounds bad, sorry I only just realised you replied. I am getting quite wobbly now. I still work for Alfa Travel as a coach tour driver at the minute, I was told that I've got to have my eyes and heart checked soon.

[Ukalimcn]

Yes, I was diagnosed with spastic paraplegia ataxia in 2019. My brother has been fully diagnosed now as under a different consultant. He has spg7 despite advising my neurologist, I still do not know my gene, which is frustrating as if there was any trials or medication to help, I can’t enter. I had blood tests taken in 2019, they have said , I do not need to give anymore but frustratingly all other tests are negative.

For some reason, despite mentioning this in 2019, my brother being fully diagnosed in 2021, I have STILL not been advised of my diagnosis, despite asking many times.

I wonder if the test is too expensive for the NHS?????