Hi, and welcome to the forum. My name is mia. I also get the tongue thing, and I have posted on this forum several times about geographic tongue. You might want to read back through the forum looking for tongue issues. I always get these spots when a flare is coming on, it is usually one of my first symptoms. You are fortunate that they don't hurt you.

Good luck,

mia

Hi mia! Thanks for your reply! I was certain that the spots had something to do with lupus but since they were never around when I was at the Dr., I never knew for sure. Like you, I have noticed that they come around the time I get a flare-up. I remember right before I was diagnosed I was getting them pretty bad, covering most of my tongue!

I'm sorry to hear they are not painless for you! How painful are they exactly? I bet eating certain foods makes it worse! Thanks for your suggestion of going back through the older postings. I will try that. I bet the subject has probably been covered pretty well.

I hope your lupus is under control. Normally mine is, but periods of extreme stress pretty much guarantee a flare. I'm in one right now unfortunately. This site looks great! Lots of active people! I hadn't been on any lupus message board sites in a while. I see now how much I missed having such a great supportive environment. I'm looking forward to being as active a participant as I can! Thanks again for your reply!

sherri

Hi,

not only should read back through for the tongue issue but for all your symptoms. It is always nice to know that someone is experiencing the same symptoms, especially when they are weird!

I noticed you are from the la area, I grew up in azusa and placentia. Do you know those areas? I live in dallas now, but still get back to visit my older sister who lives in menifee.

Good luck

mia

So I got on google and searched weird tongue spots because I found one on my tongue pretty much how you described. It doesn't really hurt, but I was freaking out that I have tongue cancer or something. I was shocked to see Lupus mentioned because I have been tested for Lupus in the past from some other weird symptoms but they haven't been able to completely pinpoint it. I guess it can take years to diagnose?

The other symptoms I have is that I get really bad sharp shooting pains in random parts of my body. Mostly limbs. Like nerve pain or something. Had an MRI and they pretty much ruled out MS.

I also have pars planitis. It is where your eyes just randomly start producing anti-bodies. you can lose your vision over it. Well I found out that can be a sign of lupus...or any other auto immune disorder.

When the rheumatologist checked me for lupus I had no protein in the urine sample. I did have a positive ANA suggesting lupus but when they did the ANA panel it came back normal.

I don't know what to think, but to keep having weird symptoms come up and find out they could be lupus over and over again, hmmm.

When I was pregnant my nerve pains went away, but as soon as I had the baby and nursed they started slowly coming back and then when I stopped nursing the pains hit hard again.

I also have depression/anxiety.

Can anyone offer any advice or help?
Thanks
Bri

I have been dx with Lupus for 7 yrs now. I am 25 years old now. In the last month I have notices a patch on my tongue kind of looks like a round smooth patch. I happened to go to the dentist and he prescribed Kenalog wich I am not crazy about because I don't like steroids. Im wondering if this will go away and am scared it will get worse like the pictures I have seen. It looks like Geographic Tongue.