- diagnostic limbo

[Guest guest]

Those are very interesting details, . So sorry that you aren't

fitting neatly into one diagnostic category. I truly know the feeling

since I don't either.

Obviously something serious is going on, but it doesn't sound like

classic RA - at least not yet. Or not RA alone.

Have they ever done further testing of the ANA? Anything more specific?

For example, since you were saying that you suspected it could be lupus,

have they ever looked for antibodies specific to lupus?

By " bone pain " I'm assuming that you mean deep pain that you experience

in areas away from the joints and not in the muscle. Sorry, that doesn't

sound like any fun at all.

How many years ago did the first symptoms start?

[ ] Re: Plaquenil

> This was technically the third opinion. I first started going

> through the ringer of tests, etc... while I was living in NY. I

> went through everything... Hand x-rays, hip MRI, brain scan, nerve

> tests with needles poking into my feet/hands, Bear test (?) to check

> brain activity, and lots of blood work. Basically the only thing

> that came out of all of that was a positive HIDDEN rheumatoid

> factor, high sed rate, and completely normal everything else.

> Carpal tunnel and Lyme Disease were officially ruled out, as was

> MS. Anything else was up for grabs. Symtoms were (are) severe

> morning stiffness, severe joint pain, severe fatigue, and random

> less severe stuff like headaches, I passed out while driving once

> (thus the brain scan), my thyroid was out of whack, cold/heat

> intolerance, blah, blah, blah. Now I know that some of that was the

> beginning's of Raynauds and my thyroid disease. I still have severe

> morning stiffness, but now it lasts pretty much all day--or any time

> after sitting for a while. I also have acute pain in joints, but

> also major muscle weakness and some random pain thatr I can only

> think to describe as bone pain. (How do you define " bone " pain???)

> The rheumy in NY said we would wait to figure it out after I had

> kids (I was a few months away from trying for my first), but it was

> probably RA. Then I moved here to Chicago and my new rheumy here

> said the same thing. On exam I show no swelling, but with my hand x-

> rays now showing joint narrowing and mild bone loss, continued

> elevated sed rate, and positive ANA it was still " probably " RA.

> But, may not be--maybe we'll know more in a few years when blood

> tests are more conclusive and your body produces more antibodies.

> Then with my recent job change and inevitable MD change, this newest

> rheumy (whom I love and already trust) agreed... On exam she

> wouldn't peg me as an RA girl, but in going with symptoms and some

> of the blood work it might be. Or not. So, with three docs all

> basically saying the same thing, I guess really I am not 100%

> conluded as having it, but then again, until it is defined as

> something else that's what I'm going with. When I read about it I

> exhibit all of the symptoms--except I really don't have swelling. Go

> figure!

>

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