heartsongs

Weaving my way around Rheumatoid Arthritis.

Lupus?????

with 2 comments

For quit some time I’ve noticed that my face gets red when I spend any time outdoors in the sun. It disappears in a day or two, and never feels burned, so I just shrugged it off as another weird thing my body was doing. DD1 has commented on it when I spend Saturday morning at the farmers market, so I know it’s not my imagination.

This week, I discovered this particular rash and the fact that it gets worse in the sun, may have diagnostic significance. It looks suspiciously like a malar rash, the classic Lupus rash.

I had blood work done in June, along with a standard STD panel. The syphilis test came back with a false positive. The NP said not to worry, this happens sometimes. It doesn’t mean anything.

For the past month, I’ve had a row of sores on my inner lip and the edge of my tongue. Not painful, just funny feeling. The dentist didn’t see anything to worry about.

The blood work I had done last month, to check on how the RA markers were doing, came back with a note that said, “+RF and negative anti-CCP can be indicative of Lupus”.

This weekend I was looking for more information on the studies they have done about loss of smell being an early indicator of several diseases. Didn’t find anything new, but did find some interesting stuff on diagnosing Lupus.

They have a set of 11 criteria for Lupus. If you have 4 of the 11, they consider that enough to dx you.

The rash is one, the sun sensitivity that makes the rash worse is two, the false positive syphilis test is three, the sores in my mount is four, the +RF/negative anti-CCP is five,  joint pain is six, and the fatigue I have is seven.

7 out of 11.  Guess I’m an over-achiever.

Now, I’m not a doctor, but the evidence is mounting that this auto-immune stuff looks like Lupus. Lupus instead of RA? Lupus in addition to RA?

Isn’t Hashimoto’s thyroiditis and Celiac Disease and RA enough?

My smell test is Thursday. Seeing the ENT is the first step, to establish what I already know – that I can’t smell things properly – and to see if he can find a problem in my sinuses.

The next step was supposed to be to get a CAT scan or MRI.

Now, I think the next step is to get more blood work and to find a Rheumatologist who knows about Lupus. There’s too much evidence pointing in that direction. Which, I guess is good. Lupus is a better dx than Alzheimer’s or MS or Parkinson’s.

Maybe in a week or two, I’ll be able to look at this as a glass half full sort of thing. Right now, I’m sad and scared and overwhelmed.

 

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Written by wovensongs

December 12, 2011 at 8:02 am

Posted in Autoimmune

2 Responses

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  1. “I’m sad and scared and overwhelmed.” I can definitely understand that. Wow! That is a lot to take in. My naturopath has commented several times on whether I have lupus or not based on the reddness of my face. Adding to the disease list wouldn’t be fun.

    Hang in there. I think figuring out what is going on can almost be more frustrating than finally knowing so you can deal with it. And please keep us updated. You are in my thoughts and I will be hoping for the best. Hugs to you friend.

    Cathy

    December 13, 2011 at 4:11 am


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