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New Member

Date Joined Oct 2009
Total Posts : 5
   Posted 11/3/2009 10:09 AM (GMT -6)   
I have just a few questions. Here is a little background information. I went to the rheumy last week after having unexplained hives and facial swelling since August, numbness in my feet and hands, a + rheumatoid factor and an ANA titer of 1:320 with a speckled pattern. I do not have any joint pain, swelling or weakness. All of the other labs were normal (cbc, thyroid, liver, kidney function, etc.) He doesn't think I have lupus or rheumatoid arthritis. He noticed some areas on my arms (which I thought were freckles-not new, not in any relation to the hives) that he thought might be cutaneous mastocytosis or urticaria pigmentosa. I guess it is where there is an abundance of mast cells in your skin or systemically that can produce massive amounts of histamines to a variety of triggers. So I have an appointment with the derm. for a skin biopsy. He also ordered a whole bunch of labs which are more specific than what I already have had. The results are not all back, but I think my rheumatoid factor is negative now. My hives have been a lot better than what they were with the first set of labs, I am on all kinds of antihistamines to keep the hives at bay. What are these mouth sores like that some people get? I woke up with a couple of irritated spots on the roof of my mouth, they don't really hurt, it just feels like I burned myself with hot food, but I didn't. And what are some of the symptoms some of you presented with. When I went to the hospital for the labs, I spoke to someone who has lupus, was very familiar with the labs I was having performed and said my scenario is very similar to how she started. She also said it took her 3-4 years to get diagnosed and has battled with hives for almost 25 yrs. Any thoughts would be appreciated. I am to see the rhuemy again after I get my biopsy completed.

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 11/3/2009 11:43 AM (GMT -6)   

You're going through what we call diagnosis limbo, and it's a real tough place to be. These autoimmune diseases are so difficult to diagnose that a good rheumy won't diagnose until there's absolutely no question as to the diagnosis. My ANA has gone from positive to negative to positive again, and I'm not sure if it changes when I flare. Stay on top of your rheumy. The earlier you get treatment for lupus or RA or other AI diseases, the faster you can stop it in its tracks.

I hope you'll stick around. You're going to need a good support group if this turns out to be an AI disease.

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 11/3/2009 7:58 PM (GMT -6)   
My mother and I are going through the same thing. She has a tentative diagnosis of ulcerative colitis with some kind of autoimmune disease with it involving sores in the mouth and gi tract and hives occasioally too, like shingles almost. They are considering a diagnosis of Behcet's. There is another disease you might want to read about called Reiters syndrome (I may have spelled it wrong) that also involves sores too and occurs after certain infections. In our case, its not so mucha question of whether or not we have ai disease, we just don't fit in the common types.

Sores are typical with AI disease so I don't see why they view this as strange, except that we are much sicker than they expect us to be I guess and the sores are very stubborn and hard to get rid of. But they are for many people with AI disease, especially once they take hold.

Nothing surprises me anymore, things break that I didn't think could break. I hope it is something they can clear up. My mom takes Acyclovir (for herpes/shingles), miracle mouthwash, and there is a dental steroid cream they can give yo to apply to the mouth sores to help them clear up faster. She also gets entocort and antibiotics lke flagyl sometimes.

I feel for you, the sores are miserable.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

New Member

Date Joined Oct 2009
Total Posts : 5
   Posted 11/3/2009 9:00 PM (GMT -6)   
Thanks for the responses. I really don't think I have had the type of mouth sores like some of you. My problem has mainly been the hives and the extreme itch/scratch cycle that comes with the hives. I would really like to just figure something out and go from there. I have more or less accepted the fact that I have some kind of ai disease. As my pcp said, if I have blocked all of my histamine receptor sites and I still get hives, it has to be an autoimmune issue. It just seems like some days I am falling apart, I just turned 39 and feel like this is the beginning of the end. I feel like a hypochondriac too, because I am trying to be hyper aware of any possible symptoms that I would maybe normally dismiss and I wonder if I am imagining things. I have been so clumsy lately too. The other night, I got up in the middle of the night and fell trying to turn on a light, and literally hit my head on an oak end table. Let me tell you, it didn't give at all. So for a couple of days, I was more concerned about a possible head injury than an ai or lupus. It doesn't sound funny, but it has been a nice distraction and has made me laugh more than anything lately. I have been mostly healthy my entire life, but when I get sick it seems like I go big: stomach pain/nausea = ruptured appendix, cold= influenza type a, ear ache = bell's palsey. So this will probably be no exception. Sorry, this is a little more rambling than I intended. I guess some of these feelings have been festering. At least I know you guys understand.
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