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Hi Taniaaust, Cant write much just now. My veins thing gradualy got worse at the same time as the rest of the ME stuff over a number of years. I'll try write more soon...
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Everyone with spots on the MRI that aren't quite like MS:
Have you ever been tested for antiphospholipid antibodies?
Also back to taniaaust1, I can't remember for sure, but I think my cortisol levels were normal. I know my hormones are at a level much younger than my age, I'm not pre menopausal. Is cortisol one of those?
However, in some cases, one way to establish whether a person has Hughes/antiphospholipid syndrome as opposed to MS, is to treat them with low dose aspirin and see if their condition improves. Warfarin is not recommended in view of the risks of bleeding associated with warfarin, especially in older patients.
From Willows link above:
Maybe it is worth trying baby aspirin? I would assume that if aspirin doesn't give me a noticeable improvement, then it probably isn't sticky blood?
Ok, so I just got the antiphospholipid comprehensive done, and it doesn't detect antibodies like the cyrex test does.
My beta2-glycoprotein is 15, positive is above 21. That seems suspicious.
Needless to say, I'm not sure what to think.
At least they are all negative. If it were me that was suspicious about the numbers, I would get out my calculator and do the math for the ratios. I'd do it, but my brain isn't fully functioning yet. Maybe in a few hours I can do that for you if I get some down time?
If all the tests come back negative, it would just mean not hughes syndrome, right? Could you still have sticky blood?
Don't you love it when that happens??? Are there doctors that specialize in this area that could un mud the conflicting tests?
They say it's not unusual for ANA to fluctuate and I've even had one or two come back negative in the middle of multiple others coming back high, so maybe other kinds of autoantibody tests can fluctuate, too.
Also, labs can make mistakes, and one could be a mistake.
Thirdly, ANA is not splendidly accurate as best I understand (same patient, same time, will vary from lab to lab, says a recent paper), and possibly the other tests may not be, either.
I thought it was the practice in Australia to also do an ENA panel when you had a positive ANA. I don't have ME/CFS but my G.P. ordered a (bulk-billed) ENA test for me to rule out Sclerodema, Sjogren's, SLE or a connective tissue disorder even without a positive ANA after an autonomic function test panel showed I had Restricted Autonomic Neuropathy on top of chronic GI dysfunction and OH.Latest test results show speckled pattern 1:640. Last time was 1:320 and time before was 1:640. I get them tested every 12 months or so.
Will speak to my GP about it next time I see him but so far no one seems to be very interested in these results.