(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

[shehasathree]

I'm sorry, that really, really sucks.
:(

[sheramil]

"Bob" damn it, if they're going to test their potions on you, they should at least be paying you a hefty consultant's fee. PARTICULARLY if he has "no more ideas or options".

grr

[mama_marmotte]

I'm so sorry.
I had tests done by a neurologist when I emigrated to the US from the UK 4 years ago (26 years after becoming sick) and so convinced was I that they would be normal I didn't bother to call for the results until 2 months later.

For me I did have something else, idiopathic small fiber neuropathy, and it has a lot of overlap with ME.

I had nerve biopsies, but as far as I know I'm the only ME person who has had those kinds of tests.

I'm wondering if you would consider pursuing that avenue with your neuro, or whether you've excluded that already?

[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 :)