Maybe not Lupus?

So after working with my Rhuemy since September, and being on various meds, I am finally starting to have more good days than bad (but the bad are still really bad when they come.) But now instead of Lupus, my rhuemy is thinking it maybe Reactive Inflammatory Arthritis from my Crohn's disease, with a possible fibromyalgia thrown in there since my blood tests came back normal for the ANA and such. After doing my own research though, I still think it is Lupus because of all the other symptoms I have like the cognitive dysfunction; being sensitive to the sun since I was a child...passed out a few times from it even, random fainting spells I've had since I've been about 12yrs old (I am 28 now), the flaky dry skin patches on my arms, and my oh so wonderful depression. I think I like my rhuemy, but I really don't have any other to compare him too. He is nice, but uses his laptop more than physically checking me during my visits. He is very quick paced, and I feel rushed at times, so I don't think I've been able to tell him everything (I wish my memory was back to what it used to be, but I'm a forgetful Fran since this bad flare began in mid-July.) There are only 4 rhuematoligists in my area, and soon to be 3 because one if about to retire.

So my question is, have any of you had this happen before? As in, not getting back 'bad' blood work ups, and the rhuematoligist goes onto the next auto-immune disorder instead of further investigation. Did you change doctors if so? Or does it really matter which one he thinks I have, since from what I've read and researched they are all basically the same, or at least treated the same....or is this a wrong assumption?

Also, I do not have insurance due to being denied for the past few years because of my crohns, and other mental disorders (IE. pre-existing conditions.) Thankfully because of Obamacare now, I will have it starting on January 1st, but till then I am extremely limited in doctor visits because of the cost of seeing him every time, and the costs of the bum-load of medications I need to just to be able to function.

Thanks for the feedback anyone and everyone!


Boy oh boy, does typing hurt now too since the arthritis or whatever it is, has moved into my fingers now in both hands as well. Ughy, ughy, uugghhh! haha. :)

Crohn's is an autoimmune disease and can have multiple symptoms from it in addition to the GI and the arthritis can be intense too Depression is a normal reaction to any serious chronic disease and depression can also cause cognitive dysfunction Often treatment of depression will lead to a marked improvement in cognition Unfortunately because of federal mandates doctors are now required to do computerized records so you will see this pretty much everywhere The best is during a MD visit for a serious potentially life threatening illness the government thinks it is important to know if you wear your seatbelt! :>) So your doc may be perfectly fine - if you like him you might to stick with him especially since you are improving!

Nic, my labs are always strange. Often unexpected according to what is going on sign and symptom wise. Don't think twice about it. Glad to hear you are feeling better more often than not, means you are def doing a lot right! Keep it up, don't muck around with what is helpful.

two family members have Crohns, and my brother has extensive joint and connective tissue issues with his. It could very well be related to yours. However, many of us with one autoimmune challenge later find out there is more than that one going on. Just live well, moment to moment. Your rheumy sounds like a good one. If you are feeling rushed, maybe borrow this trick - make a list of questions and symptoms that concern you before your appointment, and hand them to your doctor. You could also use them for reference to jog your memory. At a glance something important won't get left out.

right there with you on the typing. Just bought a speak to type program, first headset didn't work, husband got me a good one, and what happens? I get sick and completely lose my voice, yet again. Grrrrr. (My daughter works in the hospital, was sick last week, and came here before going on antibiotics for a nasty respiratory infection, knowing I pick up any germ within 10 miles. Pretty sure I will be at urgent care by tomorrow evening.)

I have these great mittens that have grain hot packs you microwave and slip into the mittens, they really help with stiff joints. You may want to try them. Soaking my hands in very warm water with epsom salts helps too.

hugs, Louise