Hereditary spastic paraplegia/paraparaisis

[youarenotkiddingme]

Ds has just had genetic tests looking for this condition to explain his difficulties.

He has had various MRI over the years (clear), always struggled with balance, conordination and muscles but it seems to have got slowly worse over the past 6 years.

He takes 60mg of baclofen a day which controls his pain.

Just looking for anyone who has a child with this and a chat really as we wait for the results.

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I am not sure how to PM you from my phone but DS has a diagnosis of HSP, can you PM me?

I have to pm from iPad so I'll log in tomorrow and do it.

It'll be great to chat - thanks

Sent a pm. You'll have to log into MN on safari to receive them it can't be done via the app.

Can I bump those as my son is currently be investigated for this condition and I feel like he is being fobbed off. I am having to fight for appointments (pre-corona).

I also feel like the physio therapy does nothing except make he balance on one leg better. When he walks or plays sport it is exactly the same, no change.

Soon he will be starting secondary and I am so scared for him. He already gets bullied during p.e and has low confidence.

Jobseeker, I have just seen your message
I will pm you in the next couple of days, I have to dash now.