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What's it going to take to get a definitive diagnosis for lupus? Sheesh! Are the plaquenil and prednisone for the arthritis? How bad is the arthritis? I'm sorry you are struggling with so many things at once. Which doc have you gone back to for the return of your symptoms? I'm really baffled that they wanted to wait 6 months for re-checks of your ferritin level. Obviously that wasn't a good plan, since you couldn't "make it" until December.

My hematologist had me coming in every 6 weeks. I did also have low hemoglobin and hematocrit, along with a ferritin level of 5, but it was the ferritin that she was most concerned about. At the first re-check my ferritin had only increased to 5.7 and my other numbers were still low. I'm now no longer officially anemic and my ferritin was up to 26 at last check. She wants to see me again 4 months after my last appt. She said that low ferritin definitely causes symptoms, and that she expected me to start feeling better once my level had reached around 100. I really don't understand why your hematologist is not taking your low ferritin more seriously. If it's bad enough to require iron infusions, shouldn't you be tested more often? Maybe it's time for a new hematologist.

I hope you get some relief from your infusion, if you end up having one. And that you get a definitive diagnosis soon. Can you ask to get blood tests more often, so that you don't get to feeling so sick before they decide you need another infusion? That just seems so unnecessary! If the infusions are going to be a maintenance thing, it would be nice if they could actually [I]maintain[/I] your feeling better.

Let us know what happens....
How did your appt go? Is there another iron infusion in your future?

I'm sure you've already thought of this, but just in case you haven't...I was wondering if you request copies of your labs and other test results. Maybe all these specialists wouldn't do repeat testing if you were able to give them fairly recent copies of what you've had done already.

I feel really fortunate to have almost all of my docs working within the same system--all my info is at their fingertips. It would really bite to have to start all over every time I got referred to a specialist. I'm sure it's getting to be very expensive for you. :(

Also--and I know this is hard on many levels--have you considered applying for social security disability benefits? I've been granted them on a permanent basis. It's not a lot of money, but it does come with Medicare which at this point I think is better than many insurance plans. I don't know where you are in your nursing career or if it is becoming difficult for you to do your job....Just something to think about if things become overwhelming for you, which I hope will never be the case.





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