Hereditary spastic paraparesis (HSP) and Ataxia ... - Ataxia UK

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Hereditary spastic paraparesis (HSP) and Ataxia how do you get diagnosed with HSP?

Grapes12 profile image
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I wondered if you could point me in the direction of how to get a diagnosis of HSP? If anyone has one and or are in the same position as me. I am seeking answers.

I have an extremely rare chromosome duplication with very little known about it. I have had a look at some research papers and there was one case of my gene causing HSP. I know so many of the conditions are so similar but I fit nearly all the criteria for HSP and am now a full time wheelchair user as my legs no longer work (basically they are paralysed). I definitely have Ataxia and am wondering if I could have HSP on top.

All I get from medical professionals is you are very rare and there is no treatment even if we did know more its frustrating and with it being degenerative if I could find a route cause that would help alot.

Thanks in advance.

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Ukalimcn profile image
Ukalimcn

I have SPG7, hereditary spastic paraplegia ataxia. Initially, I saw go and had mri, then I was referred to my local hospital neurologist, who after a few sessions referred me to UCLH. That took 2 years, then a further 2 years to diagnosis of SPG7. Good luck. Hope helps. But even with a diagnosis there is no cure , wheelchair Pilates and physio is the way to go, best wishes

Grapes12 profile image
Grapes12 in reply to Ukalimcn

Thank you so much for your response.

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