Or... I DON'T Have Hughes Syndrome...

I got a phone call from the rheumatologist’s office this morning, and the woman reported that all my tests came back “normal” and there was no change to my treatment called for at this time.

Um… WHAT?!?

I saw the tests for myself! Four separate indicators for APS or Hughes were abnormal and the test itself said that these were at disease levels! I suppose the doctor decided that the abnormalities weren’t “enough” to call it a disease even if the test itself said so…? I’m getting my hands and feet x-rayed and talking to the doctor again next week, so I can ask him what the heck is up with the test saying I have this issue, and his declaring that, no– actually, I don’t.

Regardless of what he says, I’ll be treating myself with aspirin, quanine (which you can get in tonic water), and vascular dilators like vitamin B. None of those things will hurt me, so it seems like the prudent bet, especially if the TESTS say I’m in danger of a stroke because of my sticky blood cells! So far, I haven’t noticed a huge difference, except in my brain fog issues– but I’ve been starting low and slow so I can find the right dose of everything for maximum help without causing harm. I always take my aspirin with meals, for instance.

I actually thought I might have some treatment that could help me, and a diagnosis that would be an easy thing to point to for Disability. Now I know I’ll have to go the longer and more complex and hardly guaranteed lawyer route. I was hoping I wouldn’t need to do that!

Time will tell though. If I find that using natural blood thinners and vascular dilators helps me in any real way, I’ll continue to use them. I’m still carefully picking my way through it all, and paying careful attention to how my body responds. Placebos don’t really work on me at this juncture. I’ve tried too many things trying to get better and all to little or no avail. I’m not addicted to “hope-ium” like many people in the early stages of my illness (chronic fatigue, myalfacial pain syndrome, etc.) After hundreds of disappointments, I’ve stopped thinking there’s a way out of this.

But for a few days there, I thought I had an answer. I dared to dream just a little. It just figures that the test numbers weren’t impressive to the doctor and I’m just… another woman with mysterious ailments no one will ever take seriously…