(no subject)

[jeshyr]

Copy of what I wrote in support group. No spoons to rewrite:

So I've been sort of not properly diagnosed for 20-plus years. By which I mean that (like many of us) I have a list of labels as long as my arms but it doesn't explain everything - I'm sure lots of you know the feeling.

So anyway early this year I got sent to this specialist who looked at my blood tests in a different way to everyone else and said he saw patterns that were significant of autoimmune stuff and he wanted to look into it further. I was quite excited because none of my docs had done that before.

Anyway this guy is good in person but does NOT follow up so I have spent epic amounts of time waiting for him. Finally got fancy blood test results today - nothing.

Fuckit so fucking much.

He wants me to try Plaquenil anyway as a sort of generic autoimmune medication, but had no more ideas or options.

Feeling really let down and also mad with myself for hoping he'd figure out what was going on.

:(

Comments

[jeshyr]

I've had (several) EMGs and earlier this year I had a QSART test that I'm told was normal, so I think that excludes it.

I do have a lot of abnormal autonomic tests, just not those ones :)