Hi

[Jojo1962]

Hi everyone i am Joanne from Australia and was diagnosed with spinal muscular atrophy in 1985 but was ruled out about 2 yrs ago after genetic testing. Haven’t been diagnosed fully yet but specialist thinks it’s a rare MND. Have had trouble with taking deep breath’s since April . Been to emergency 8 times and they say my oxygen is normal Send me home.
tell me it’s a anxiety.lost appetite and about 13 kilo.my back cramps up badly when I try to lay back.. just had second lung test and see neurologist again soon .

[shelly21]

Jojo1962 welcome to forum. Wow what a journey. Will they do a lung function test and carbon dioxide blood test? In the UK our respiratory departments sort these.
X

[Jojo1962]

Had lung function test done in April which wasn’t to bad but they said a niv machine might help which i only tried once for a few minutes and it scared 😱 me. Just had another lung function last week. Waiting on results.yes was done at respiratory clinic at hospital

[shelly21]

I use niv overnight. It does help. I did an hour here and there to begin with. But its your choice whether you continue with it.

[Jojo1962]

I will definitely give it a go when I get results ..they might suggest it again as I didn’t bring it home with me in April

[AngieCanuck]

Hi Joanne, I hope they sort your diagnosis out soon. It must have been a shock to have it changed from spinal muscular atrophy after so many years believing it was that. Very frightening to know how little doctors know about neurological conditions.
I bought a pulse oximeter, online. It is great to have around during a COVID pandemic (why I originally bought it), but can be a quick reassuring way to ensure you are getting enough oxygen. It might help to prevent future ER visits where they tell you all is good and probably down to anxiety (I hate when they do that !!?!)