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View Full Version : probably not SLE after all



karenboss
02-11-2010, 11:54 AM
I had an enosopy done yesterday and he says I have scaring on my esophegus and esophegal dysmotility - that with myrid of my sypmtoms that are pointing to SSc instead of SLE, I think it is CREST. Which, I could mention my rhumy suggusted at my last visit. My echocardiogram also showed some extra scar tissue but PH tests are still very good.

I'm rather bummed about it to tell the truth, but at least it is an explaination.

abbasgirl
02-11-2010, 04:53 PM
So sorry you have sclero, Karen. Is that what your rheumy is calling it or the specialist that did the endoscopy?

karenboss
02-12-2010, 10:32 AM
Thanks Abba -
My dx is lupus but in my last visit (I have the copy of the transcript) she put in the body of the notes (not where DX goes) that"symptoms bring to mind CREST Syndrome" My GI calles it MCTD. I could be wrong but I don't think one sees the kind of eshpogal problems I have with straight up Lupus, I think that's why he keeps saying MCTD even though everything else is Lupus. Serologically I look like Lupus. I do have mouth sores and scalp sores which are not typical of SSc, I also have Sjorgen's so maybe MCTD is going to be the best description. Or maybe Lupioderma. Or Sclerogern's. Maybe just the flavor of the month.

In the end probably not worse than straight up Lupus, maybe better. Just such a bummer when you read about SSc or CREST, it says, there's no effective treatment that will alter the course of the disease.

On the bright side I have no pulminary involvment at this point (except I do have a debt to the pulmonologest now - it is SOOO expensive to be sick)

I felt pretty crummy about it when i first posted but am doing better now. Part of it was that the procedure left my throat sore and I couldn't eat. I couldn't eat for a day and a half before then couldn't eat for a day and a half after (still not great) so dang it - I'm grumpy.

I think I'm learning that a Dx is a process and not always set in stone.

magistramarla
02-12-2010, 10:45 AM
Karen,
My dx is MCTD, too. It seems that we get ALL the fun symptoms form everything. Mine is Lupus, Sjogren's, Psoriasis and RA. I've been researching Sjogren's a bit, since I'm planning to go to the conference in San Francisco that BonusMom told us about. It's amazing how many of our symptoms can come from Sjogren's. I had thought that it was just a small nuisance with the dry eyes, but the research has taught me a lot more about it.
BonusMom and I will report back after the conference in April. Hopefully, we'll learn something new and useful for all of us.
Gentle Hugs,
Marla