Hi, my name is Andrew, I've seen an ophthalmologist that's diagnosed me with 'acute miopathy'

RazielESDragon

I was diagnosed in August, after learning about marfan from my sister, I'm the 4th of 6 children and the 3rd of those children to find we got it from our father .. thanks dad (lol)

So far I've seen an ophthalmologist that's diagnosed me with 'acute miopathy' (if I'm spelling that right), I've seen a cardiologist today that advised me to come here, and I've been struggling with sciatica and ligamental problems in my legs for months (diagnosed with sciatica last year) .. I'm having a lot of falls from my ligaments saying 'f*** you' and sending me down like a ton of bricks, all my gp could suggest was physio but that's never helped me in 19 years (various injuries in my younger days) .. should mention I'm 35, work as a community carer and have no kids yet to worry about giving this nightmare to.

Any advice?

Hannah_Alumni

Hello @RazielESDragon

Welcome to the community!  

I am so sorry to hear about your diagnosis and the struggles you have been having. Can I ask, you mentioned speaking to your GP, but do you have a consultant or specialist you are under? I would encourage you to speak to them about further support. 

RazielESDragon

Um, there's a cardiologist I saw yesterday and I'm going back to the ophthalmologist sometime around January/February .. but if you mean a specialist for my ligaments, no, I wasn't even aware there were specialists.

Hannah_Alumni

You can ask to be referred to an orthopedic specialist, seeing as you feel the physio hasn't helped, it may be worth exploring  

RazielESDragon

Do I need to try the physio first? It's not that physio hasn't worked this time, I'm somewhat choosing not to try it because it's never helped any other issue I've had in the past