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Lupus/Mixed connective tissue disease

Feb 22, 2015 12:28 PM

My rheumatologist is working on this diagnosis with me at the moment. We just did blood work again Friday to see if there has been any change. My ANA levels are off along with B-12 and iron, but that hasn't clearly allowed a dx. I was practically paralyzed with pain last week but was able to get in and they filled a script for prednisone and a pain patch refill to help with my chronic pain from a past auto accident. I have been on these for lass than 48 hrs and I feel so much better.

My dr is debating lupus since my symptoms indicate that as a possibility and I have a face reddening, but that is the last thing he wants to dx me with and I need definitive results for that. Anyone been here and/or have thoughts on the subject at hand?

Feb 22, 2015 2:46 PM

I don't think they will actually diagnose Lupus until you have organ damage. I had the facial rash, but not the positive ana. Now i don't have the facial rash (lots of immune suppressant cream) but my ana is positive. I was pretty much told that unless there is organ damage, i get pregnant and have miscarriages (i don't want kids so I'm hoping to never get pregnant), allow the rash to come back, get vaginal and mouth sores they won't diagnose it.
My mom has lupus and both of us are pretty sure I have it.
The best thing to do is to try to stop progression naturally. unfortunately that is eating clean and exercising and putting yourself first. Which is the general crap you get told for every chronic illness.
there isn't anything the doctors can really do except give you the same immune system represents that they give RA patients, and in both cases they wait until the is obvious damage until they give a diagnosis.

Feb 22, 2015 7:33 PM

Can you elaborate on the sores? I've never heard this as a possible symptom

Feb 22, 2015 8:17 PM

They never told me. They just said blood blisters in your mouth are not the right sores.

Feb 22, 2015 8:47 PM

Does anyone have hives that come on and look like a moscato bite. Itch and swell if you scratch them. When you scratch they double in size and spread and turn red . Then they go away. . It's weird.

Feb 22, 2015 9:18 PM

The sores the docs are talking about are canker sores. It's like a big gray crater on the inside of your lip that hurts really bad.

Feb 28, 2015 12:02 AM

I get open sores inside my mouth along my gums and on my tongue directly.

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