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Old 09-03-2009, 07:47 PM   #8
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Re: what were your first symptoms of lupus?

duan65, obviously I'm just a patient & can't know if a single root cause could be behind all your problems, but here are some things you could consider.

You mentioned IBS. Have you taken meds for it, and have they helped? My rheumie pointed out to me during my 1st appt. that because my IBS meds had NEVER HELPED, that should have been a BIG RED FLAG to my earlier doctors that they should have considered OTHER causes. (Repeated tests had ruled out ulcerative colitis & Crohn's for me, so that left IBS. But once I started Plaquenil for lupus, I haven't had an "IBS" episode since. I don't think it WAS ISB, is what I'm saying.)

Likewise, for IC, were you officially Dx'ed via that horrible knock-out test? (BTW, it's autoimmune, too.) Do you take meds for it? And have they helped? If not, that could be another red flag. (Meds I tried hadn't helped me there either = another red flag.)

Then look at the Dx'es you've been given so far & see how much they explain. For example, could IBS and IC explain all/most of your symptoms? Would your joint pain fit into either? (Etc.) If you have too many symptoms that don't fit your Dx'es, then that's a red flag, too.

It's also interesting to me that you keep getting "add-ons". I did that, too, and finally concluded it all HAD to be related somehow. They were different problems & yet they felt related, is the only way I can explain it.

One of my local drs. said something quotable to me: when so many disparate things are going on, a dr. should look for a "single bullet theory". There may not BE a single one, he said, but a doctor should look.

This is badly written---I'm struggling for words here... I'm guess I'm trying to convey *ways of thinking* that you want to see in your doctors. I hope you can get one or more of them to take a big step back, to see if there's a BROADER picture that's been missed.

Do you get along particularly well with your GP, your gastro, or your urologist? Whomever it is, maybe you could start there & talk about the possibility of a broader picture. I do hope you work your way to a rheumatologist, as that's certainly one branch of medicine that it would make sense to consider, I suspect. Keep in touch, OK? All my best, Vee