For almost 20 years I have been having this red hot rash like appearance on both cheeks and across my nose. It is triggered by such sensitivity to heat (inside and outside) and the sunlight. Doctors thought it was lupus and had me tested many many times and all tests came back negative or normal ranges. Until last year, there was no diagnosis as to what caused all of these symptoms of lupus, which I can list them, but there are so many. Sometime around the end of last year, a doctor finally diagnosed me with lupus sle and then sent me to a rheumy, who ran the lupus panel of tests and said I did not have lupus or anything else that he was able to determine. Later that year, I got a second set of tests and another opinion from another rheumy and he said I did not have lupus due the tests coming back negative or having normal results. Soooooo, he decided since he couldn't really help me that he would call this atypical fibromyalgia. Sound familiar to any of you folks in here??

Since that time I have been taking meds of all descriptions and have been to the er several times and to other doctors. No answers to any of these problems. I have lost my teeth due to my gums bleeding so much. I have lost my tonsils cause I kept getting infections and strep throat. I lost my uterus and ovaries due to fibroid tumor and cysts. I also lost my gall bladder as it was hard as a rock. I have lung problems and spasms like pluerisy around my lungs and also pains in the area of my heart and rib areas.

I have problems walking as something is very wrong in my lower back and both hips. I have so many problems and no real answers to them, as of yet. Over 20 years and still don't know what all this is. I have also had a net like rash on both legs, and doctor did not know what it was. Said it looked like some type of viral rash. I have had the sores in my mouth and nose and around my uppper lip (not fever blisters....Eventhough I have had those too.) doctor told me I was most likely allergic to some type of lip ointment I used for cold sores.

I have been to all kinds of specialists and have been run through the mill and back several times and still nothing as to what this is. It's definitely hard to diagnose and if they can't dx it then it's going untreated all these years. I have to run the air conditioning 24/7 so I can stay cool and be able to breathe. Nasal passages swell shut when I am sleeping and I can't breathe at times.

There are so many things in the list of lupus symptoms that I have. I have read much information on the disease and I really do think that's what I have.

If you have any insight on this, please let me know.

Idella

I'm a rn and have lupus dx'd about a year ago. I was very sick with stomach symptoms and stomach pain. Has anyone else heard of this. And by the way I was always told that the ana test had to be negative to be normal anything over zero was a positive test.

I'm a rn and have lupus dx'd about a year ago. I was very sick with stomach symptoms and stomach pain. Has anyone else heard of this. And by the way I was always told that the ana test had to be negative to be normal anything over zero was a positive test.

:d hello from a newbie!
I’ve been searching the web for info about lupus and found this board. I’ve never thought about joining a board before, but after reading through some posts, i’m happy I did. I just want to say thanks to everyone for the support you offer here

I started out about 6 years ago getting a red almost angry looking rash every time I went into the sun. I never really had more than that at the time so just assumed I was allergic to the sun. As the years have gone by each year gets worse for me with new and different ailments that come and go, go from good to the worst to back to good again. In the last 9 months I have started to see the doctor or rather I should say doctors on a frequent basis as I can not seem to get to feeling good any more. I have been tested for anything and everything under the sun with no answers for why I feel tired almost all the time. My body aches almost constantly now and I feel like I'm running a fever almost 24/7. I have weakness and pain that runs down my right side as well as having some type of muscle spasm in my face that causes pain and blurry vision and the blurry vision comes and goes at will. I have been told I am a hypochrondiac and the docs have said its all in my head. I finally went to a dermotologist for the rash which showed up even when I wasnt in the sun, since I avoid it like the plague. They took some of the rash and sent it off to see what might be causing it and it has come back saying that it is lupus.
Now I know the tests the docs did on me was an ANA to see if I had lupus or MS which came back negative. Can this happen that your ANA comes back neg and the other signs and rash show lupus? Thank you for any info that you can give me would be greatly appreciated.

Deyene61

The government is good at denying benefits to people with lupus. My father has lupus and is on disability/SSI but it was a struggle that lasted a few years before he could get it. According to my dad's lawyer, generally the gov't will deny your first claim. It helps to have a lawyer and remember to document document document! Document as much as you can- how you feel from day to day, what doctors you see, meds you take, anything you can think of that would be related. Also, if possible get a functional work screen in which someone evaluates you to see if you are able to work or not. When you go to court, make sure to have documentation from all your docs, therapists etc. stating your condition. Other than that, just hang in there! It's really stressful and a pain but eventually they will approve you for assistance.

Just wanted to comment on everyones frustration with diagnosis and doctors, it stinks! But I have learned to push the issues, and if you feel your doctor is wrong they might be! I was with a GP for 2 years that said I was too young for anything to be wrong and that is was all in my head. He had me doped up on Lexapro and Valium!! I finally went from him to a Neurosurgoen to a Neurologist to an Internal Medicine Doctor...and My Internist has gotten 3 big issues diagnosed and treatment underway in less than 2 months! He was also outraged to hear about my GP putting me on 160mg/day of Prednisone for bronchitis! I gained 30 pounds and fell into what he called "Steroidal Psychosis"!! So, my GP literally made me crazy! And fat!

Keep on keeping on.

I can't believe the amount of people suffering these days from autoimmune disorders (lupus, RA, polymyositis, dermatomyositis, etc). I too was given a possible diagnosis of lupus, which thankfully turned out to be negative. It's frightening. My sister is now in the latter stages of polymyositis. I never tire in my search for a cure for her. Yes... a cure, not a band-aid for her symptoms. She lives in constant pain, is weaker than a kitten, and has given up. Even her doctors have given up on her, and just keeping throwing prednisone at her, which of course comes with a multitude of hideous side effects.

I have NOT given up on her... so... have come across something very interesting... rheumatic.org. Seems there might be a light at the end of the tunnel... according to those people. I have been in touch with one of the members, and she has been wonderfully helpful and supportive since she has/had (yes HAD!!!!) polymyositis too. We are in the midst of investigating/implementing all that they have suggested there.