Negative results for autoimmune

[jazzsinger38]

Hello there,
I had my first outbreak of symptoms about a year ago and I still get the symptoms off and on, I have had the Malar Rash, the swollen eyes and cheeks, the muscle aches, bloodshot eyes, dizziness, nausea and hair loss.  I have been on thyroid meds for years now, so I know that the hairloss is probably not from that, being that it is under control.  I had the RNA test for autoimmune and it came out negative.  When I was 26 years old, I had Guillann Barre and now I'm in my mid 40's  I am also surprised that the tests came out negative because I did have an auto immune disease at that point in my life.  How many of you out there have had symptoms, but no positive test? The Dr. thought it might be lupus, but how am I really to know, when it says I am fine? Please Reply

[TrudieC]

Lupus and many other auto-immune diseases can be extremely frustrating to get a diagnosis for.  Sometimes it takes until you have other organ involvement before you can get a positive test.  Mine is positive one time and negative another.  The blood takes time to develop but by no means does that indicate that our pain or symptoms are minor.  My rheumatologist is treating me for Lupus (he wasn't sure if it was RA or Lupus initially but seems to be pointing to Lupus and the first line of treatment is the same) with Plaquenil.  I am now getting some bowel involvement and going for tests there so hope to be able to have a definitive diagnosis in the next month or two.

Keep going for testing and try going in the sun and submitting yourself to stress beforehand as if you do have Lupus it will help it to show up in the blood tests.

[Doggy_Mama39]

Hello there. I feel your frustrations as they run congruently along the same path as my own. I was diagnosed with Systemic Lupus Erythomotosis 9 years ago in Oct. I would never give somebody (especially going through the hell that we do having autoimmune system health issues) any advice that I wouldn't like recieving myself. With this said,  hopefully some of my own struggles; physically, emotionally, financially and mentally in this battlefield called Lupus will help shed some insight for you to learn from and hopefully lead you in the right direction at least.
                   Rule #1: Doctors are not Gods. They are human and as the old adage goes," To be human is to err." With this said, they can also do us a wealth of good, so long as we incorporate bits and pieces of key information which we earnestly seek out for our own good and with a mixture of good sence, intuition, heart, soul and key information sought from proven sources (more than one, several at least) before you should even attempt to burden yourself with worry or surrender. If I'd given up back in '2001' when even the World Famed Mayo Clinic in Scottsdale AZ failed to diagnose me, basically sending me home to deteriorate, well, quite frankly, I would have been dead years ago.
                            
                          I understand completely what you mean when you say that you are feeling all this pain and discomfort and believe you me, I know it's NOT in your head. It's real. No doubt, it's very real. The first step you must make is to try a new doctor. My physician for Lupus, who originally diagnosed me was Dr. Daniel Wallace in Los Angeles. I reacently left his practice to seek something closer to my home since it's extremely challenging to travel to his office from my home which is about an hour away. He was great for reading between the lines. You do not simply need a rhumatologist. You need a rhumatologist specializing in diagnosing rare autoimmune disease which are not easily detected through simple blood labs or other obvious indicators. With my paticular situation, it was extremely difficult to get doctors to understand what it was I was going through. Sure, they could see I had a murmur, that I was in a stupor, stammering my speech, bedridden with malaise, hair loss, vision impairment and skin rashses, but that was still too vague for their capacity as average M.D.'s to see beyond. This is why you need to seek out a specialist in Lupus or other autoimmune diseases. A physician who can read both the DNA in Labs as well as your list of physical symptoms in which you should begin to journal and list from 1-20 (or however many you've had to date), the frequency of occurring symptoms and the degree in which those symptoms cause you discomfort or pain. Journal it with photos if any of your symptoms manifest themselves outwardly such as a rash, redness, swolleness of limbs or even cold sores on your mouth or tongue. This can prove extremely crucial as your journey towards wellness begins with your ability to express and convey what exactly it is you're dealing with in your daily life. All this will be the determining factor in if and when you will ever recieve the proactive treatment that you so desperately need.

                      I pray this helps and remember NEVER TO GIVE UP! YOU ONLY GOT ONE YOU! SO FIGHT LIKE CRAZY, EVEN IF IT'S FROM YOUR BED SOME DAYS.

                        Sincerely yours,
                               Doggy_Mama39