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New here with questions

348 Views 2 Replies 3 Participants Last post by  Clare.T
Hi there! I was wondering if I could get some input.

I have not been diagnosed with Lupus yet but it seems I am headed in that direction. My blood work sure does look like Lupus but I don't have many/any/enough symptoms to confirm the diagnosis. I feel like I am analyzing everything...I am just frustrated.

There are a few "red flag" type things going on that I wanted to ask you all about.

1) I have a sore in my mouth that I have had since May. It is just now starting to heal. It is on the inside of my lip. I thought it would never go away! I know this is not the classic place for Lupus related mouth sores but the length of time I have had this thing makes me wonder. It looks like a big fluid filled blister. Very pretty. :worried:

2) I have been a runner for a few years now and for the last several months I have debilitating abdominal cramps EVERY time I get home from a run. It feels like I am going to have to make an emergency run to the bathroom...thankfully it's just cramping and nothing beyond that. I am wondering if this could be related to all the junk that the Rheum found (Ketones, crystals, etc) in my urine? It feels like dehydration type cramping.

3) Any time I get any kind of open sore it take FOREVER to go away. I have one on my ear now and I just can't get the thing to heal.

Does anyone have any thoughts on this? Should I mention these things to the rheum? Does it sound like anything anyone here has experienced?
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Welcome Georgia's Mama,

I was diagnosed 2 1/2 years ago and I just got my first bout of mouth sores. They are on my tongue though, so I'm not sure if this counts. I don't have any of your other symptoms, but I don't seem to have the "regular or common" Lupus symptoms. I did want to mention however that the doctors should not get hung up on meeting the 4 criteria to be diagnosed with Lupus. I had 3 clear symptoms and the rest was questionable. My Rheumy said that I had to have 4 criteria to be included in a study, but not to have a diagnosis. It is obvious that I had Lupus, even from the 3 symptoms I originally had. Hopefully your doctor(s) will see it this way and treat you accordingly.

Good luck and I hope you feel better soon.

Welcome to the forum! :)

I am wondering why you are at the rheumy's in the first place.
Yes, everything should be mentioned however trivial it might seem - it might be quite irrelevant but who knows. The sores on the ears could be discoid lesions for example - the tops and lobes of the ears and also the insides can be affected.
Rheumies would usually check for this sort of thing, same way they look at hands ands nails, the scalp and inside the mouth. Maybe a trip to a dermatologist would be helpful.

I am also wondering what blood tests you are referring to.
Some symptoms and some abnormal blood work is more weighty than others and diagnosis can depend entirely on the physician's clinical judgement.

You might have a autoimmune connective tissue disease of some sort but not necessarily fit into a formal diagnosis of SLE. There might be no specifics of any particular AI CTD in which case a diagnosis of Undifferentiated Connective Tissue disease could be given and would be preferable to a diagnosis of SLE because that diagnosis seriously affects insurance options.

Some people have suggestive blood work but no symptoms, however the blood work could indicate future developments.

I hope you get some answers soon ! Let us know if we can help you further

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