Lupus? Tests Negative So Far

Karen,
have you seen a neuro? You need to go to http:aarda.Org. You can get a lot of help. And it sounds like your family and you can qualify for a genetic study of auto-immune diseases. There are so many that the symptoms are similar. I have ms, osteoarthritis and hashimoto's thyroiditis. I hope this helps you. This can all be very confusing so do lose hope. It sometimes takes time to get the right answer. Getting the right doctor also helps.
Sandy

Hi there!

Have you gotten a second opinion? What other tests were run and what were there results? Were you still sick and having symptoms when the tests were ran?

Just a few thoughts/questions that come to mind...Keep us informed! We will help if we can!

Ladybrannon

Hi! I just read your post and I have the tongue problem, also. I have tumid discoid lupus, which so far is just affecting my skin. The tongue problem is the biggest problem. That is what started my going to docs to try to find out what was going on (i also started getting rashes...Some that scar, some that don't).

Anyway, my tongue turns very red and gets bumps and crevices all over it. It's very painful and limits what I am able to eat. One side of my tongue is jagged now, I guess from scarring of the sores. The derm never has really helped with it. I have used mycelex troches (which burn), magic mouthwash (makes me gag), and liquid benadryl (gross). When it gets really bad, I call me primary doc and he gives me pain meds, which helps a bit. He is wanting me to go to an oral surgeon about the problem.

Just thought i'd let you know that there's someone else with the tongue issues. I'm glad (sorry!) that i'm not the only one and i'm not crazy! Let me know if anything helps for you.

Feel like giving up on this subject. Rhuemy didn't have any answers "just wait and see" she thinks I may have went in to early to show anything on my lab work. She retested ana, and other things- I can't remeber them all. I see her for the results next week and write them down. My primary doctor looked at the results and said they all came back normal. Rhuemy thinks I have some auto-immune problem - possibly lupus - possibly ra. My primary thinks it's osteoarthritis. Frustrating!!!

Rhuemy did discover my pap in oct was abnormal. Some how I was never notified by my primary. I am more concerned about that right now.

Good luck...With everything. If you need to talk, we are all here for you!

Hugs,
ladybrannon

I read one of the symptoms of lupus can be weight loss. Does weight gain ever occur when not on prednisone?

Also does acne ever occur? I have acne on the sides of the bridge of my nose and over to my cheeks. I never had acne like this in high school I am now 33. I am thinking I should go see a dermatoligist.


A question on raynaud's- what degrees of color changing occurs? When I am in a "cool" room my hands are very cold and pale/slightly white. They don't turn blue. I try not to let my hands get cold as it stiffens my fingers up and slightly hurts. I do notice my toes get cold and hurt when I go to the car in the winter even with boots on. I always thought my hands/feet were just cold since our winters are quite cold. One doctor said raynaud's one said no.

Hi there!

Weight gain w/o prednisone...Not sure about. I never did. I lost like a freak before I was on steroids! Lol!

I get acne all the time. Sometimes it seems to go with the rashes while other times it is medicine induced.

As for raynaud's syndrome, I have heard people complain of white hands, blue hands and a freaky red color (think almost glowing). Mine have been blue *or* white.
I'd get another opinion...

Hugs,
ladybrannon

For the past 3 years i've been tested for everything possible with only a high elevated ana.
Symptoms include:joint.Muscle,soft tissue, bone pain that is never below a six and never leaves one part of my body for one second. My tongue is the only thing that doesn't hurt.

I'm a 20 year old female who has had many virus's including mono and a human parvovirus 2 years ago, always has had colds, and have had 4 bouts of kidney stones since the age of 12.

I've been to many doctors and traveled to hospitals and even did a pain clinic in a seattle hospital for three weeks inpatient. It did not help me at all because it was hard physical therapy and occupattional therapy at the same time they were weening me off my pain medication and changing some other meds, which made it all worse.

A lot of docters have offered me know hope or called it "somatization."
i knew in my heart there was a problem. Always listen to your body.
After hearing this and being a guinee pig for 3 years I sort of became self destructive looking for a self remidy.I've gotten 2 dui's, spent 3 weeks in jail, and then had to come home and go to a funeral and didn't realize how many muscle relaxer and ativan I was taking there I just didn't want to hurt anymore. I had to go to the hospital because my mom called 911. I was completly fine except my pupils being dialated. Scared the hell out of everybody though.

Anyways to make this even longer story short, last week I went to a knew docter,pshycenurse and he didn't even read my medical records but just listened to me, he came up with thinking it was high calcium. I got blood tests back a few days ago.And he is right. My parathyroid turned up high which means my parathyroid glands are not regulating calcium in my blood right. I have a lot more testing to do but it has explained 90% of my symptoms, and why I have had so many kidney stones and a weakened immune system. It feels amazing and so fast that someone finally found this out.

You need to keep seeing all kinds of doctors find ones that treat you like the human you are and not a # on a list they have to see today. Find as many people you can find to find information about good doctors and info.
I realized from the begginning most doctors don't care deep enough if you feel good, not just ok. Thats not right!

Where do you live? How old are you? I have a lot more symptoms and some you wouldn't think would be connected but are. The sooner you figure this out, of course you know is better. No matter what listen to your body and don't give up. Ask me anything you want. Hope I helped

p.S a good book to read is
living well with autoimmune disease what your doctor doesn't tell you....That you need to know.

Mary j.Shomon - it also has a online sight with a print off autoimmune risk factors and symptoms checklist.

Let me know how it goes

My name is dan and around october of last year I was out in the sun on my canoe when I had a massive outbreak of red bumps all over my face.
After being to several dermatologists and having it biopsied, and countless bloodwork nothing turned up positive. The symptoms are increasing to joint pain, swollen and achy lymph glands and some fatigue. No "sle" positive bloodwork was found either. I wear a 48 sunblock everyday now and really dont know if it helps or not. My next step is to see a rheumatologist for some more testing. My faith in current medicine is rapidly diminishing. Not to mention the emotional stress levels have been high. The unknown is probably the most frightening.

I wonder if this could be calcium related like yours. This is my first outreach to others and am comforted by hearing some of your stories to know i'am not alone. Any feedback will be greatly appreciated.
Thanks for your time, dan