Sorry,
I haven't read the full thread yet, as I have only just made an account to comment.

Just wanted to let you know that after a lot of self diagnosis due to useless doctors, and weighing up what symptoms could be due to long covid. After nearly three years i've finally managed to find the correct diagnosis of CIRS.

It's been the worst three years of my life, and I am only just starting to be able to make some headway toward getting back to normal after nearly 6 months of sleeping in a makeshift isolation bedroom.

I haven't gotten much further than being able to think slightly more clearly, and some steps toward getting my mobility back, but it still sucks.

Being in Australia, there aren't even any labs capable of running the complete screening blood tests that can indicate whether or not it's likely that you have it.

So I'm at an impasse medically.
I have a decent GP now, but the infrastructure doesn't exist to test for it.
The only way is to have one of two doctors in the country, who both happen to work on the other side of the country; send off the blood samples to a singular lab in Brisbane capable of running the first round of testing. Then send the blood-work in dry ice, to one lab in the US.

There is no pathway for actual medicinal treatment, due to the strict guidelines around prescribing the applicable medications.

So attempting to get better is very slow going at the moment

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