Autoimmune or co-occuring conditions?

[scaredlily]

I have been battling an autoimmune problem for just over ten years.  It has been mild up until about 2 years ago, with random flares of papular hives, joint pain and stiffness, and fatigue.  I've had ANA and RA factor tests come back both positive and negative.  My current rheumatologist had diagnosed me with "mild RA" with the possibility of changing this diagnosis should things change.

Gallstones about five years ago.  Had my gallbladder out.  Have had now three gallstone like attacks since then that GI doc said may have been stone in bile duct that passed.  Nothing showed up in bloodwork or ultrasound to indicate concern for a "reservoir" being formed to hold gallstones.

Also, a history of migraines (esp. when I was on birth control) that are easily controlled if I catch them in time with Advil.  (Basically, thwarting them before a pain pattern can start.)

Now, in the past two years things have begun to get worse.  Major fatigue, joint stiffness, full-body edema, blurred vision (esp. upon exercise,) dizziness, migraine/aura, hives, gallstone attacks (as described above), kidney stone-like pain.  Eye doc found nothing.  Blood tests found nothing regarding edema (thyroid, etc. all normal.)  Hands/wrists and toes/ankles are getting soooo much worse with stiffness.

I'm just so tired of every test coming back normal or inconclusive.  I just don't know how to proceed.  I'm just concerned that if I let things go without an accurate diagnosis, I will end up having major damage.  For example, I fear that this is lupus or another autoimmune disease that might be attacking organs or optic nerve, etc.  I'd prefer not to take any meds, but if I do have something that is progressing suddenly, I'd like the option of trying to slow it down.

I have an appointment with my GI next week for the gallstone attack.  I intend on scheduling an appointment with my Rheumatologist as well.  In the meantime, I was wondering if anyone had any idea of what this might be when looking at all the symptoms together.  Or does it seem more likely that it might be co-occuring problems that are not related?

Thanks for listening.

Lily

[Dr. Kokil Mathur]

Hi
Thanks for writing to the forum!
Well, joint pains with rash on nose and cheek are typically seen in SLE. Psoriatic arthritis is another possibility for joint pains with rash. Fibromyalgia, polymayalgia rheumatica and chronic fatigue syndrome are the other possibilities. Gout, though typically affects the great toe, can cause multiple joint pain with rash. Hashimotos Thyroiditis is another possibility. Gall stones may be just an associated problem not related to your joint pain. Pseudo gout too should be looked into.
Hope this helps. Do discuss these possibilities with your doctor and get yourself examined. Please let me know if there is any thing else and do keep me posted. Take care!

[SickMomma_PDX]

Definitely call your rheumy asap and get in. If s/he thought you had mild RA previously, it is possibly it's progressed to full-on RA or another autoimmune. I'm not a doc and can't diagnose, but your symptoms certainly sound like autoimmune stuff like RA or lupus or something like that.

Good luck, and I hope you're feeling better soon!

(If you have rashes/hives/whatever, take photos of them in case they're gone before your appointment. If swelling is very obvious, take photos of that too. It really does help if they can see what you're talking about in case the symptoms go away before you can get into the office.)

[Jules1310]

I was in a similar situation. try sublingual B12 tablets for a week and see what happens. You cant overdose on B12 (ot's like Vitamn c- water soluble). It made most of my symptoms go away.

[masneb]

Hi
    your condition sounds the same as i have .I have hives all the time joint pain and what ever is given to you wont work the only thing that did work was cyclosporin which is a drug that is that is used for transplant patients but you can only stay on it for a short time as it damages the liver and does all sorts of nasty things to your body.
I have had all the tests and they have all come back negative which is really frustrating. The condition has now been with me for 14yrs i dont think it can get any worse as it 24/7 365 days a year no let up. heres hoping that they some time soon find a cure

                                                       atb masneb