Misdiagnosed as AIDS

zakki6@aol.com · Newbie Alert Joined: 09 Jan 2004 Posts: 1

Hi!
I need some emotional support.
In June i went to the doctor for the first time in 12 years.
My youngest son has had 12 heart surgeries and my husband had heart surgery last february and we had a fire in our apartment 3 days later. My oldest son wanted to do something alone with me for the first time in 9 years and he wanted to get his scuba diving certificate. I said i would but b/c i have a history of a pulmonary bleb and small pneumothorax and asthma i thought it would be best to go to a pulmonologist and make sure it was ok.
WEll, he had me get pfts which were perfect and a ct scan.
The ct scan report came back axillary lymphadenopathy suggestive of immunocompromise ( i have no doubt i must have some immune suppression from so much stress and no sleep for all these years) and ground glass opacities (interstitial lung disease). The pulmonologist on the phone says to me "yup you have AIDS we see this all the time". Needless to say i didn't get the HIV test b/c i have no risk of AIDS at least not in the last 15 years of monogamous marriage and husband testing neg with his heart surgery. Almost every family member and extended family member has autoimmune disease. Including aunt and sister with lupus. I had the ct scan read by another pulmonologist and radiologist and they both said it was normal!!!!! so i don't know what to think. I'm so scared now and terrified of being brain raped more. 90 days after the first disease mongering the first pulmonologist calls and tells me if it isn't AIDS it's cancer. Does anyone have any experience with axillary lyphadenopathy with lupus. I have never felt these lymph nodes. I just have two very tiny ones in my neck for a long time. I started vitamins and supplements - everything to boost my immune system and i started getting more symptoms of lupus. I dont' know what to do at this point. I cry everyday and i'm a mess emotionally and mentally. I know the HIV test can be false positive with autoimmune diseases. Has anyone experienced this? A big reason i don't need to have it!!!!

stephanie

tinajee · Posted: Fri Jan 09, 2004 3:51 pm Post subject:

Hey keep your chin up!!!! We all had to go through these so called know it all doctors. Lupus is a very harrd disease to diagnose. It took me two years of nothing but agony to finally find out I have it. Good luc to you and remember God is always there. Very Happy

Saysusie · Posted: Mon Jan 12, 2004 9:08 am Post subject:

Hi Stephanie;
Lupus is very,very difficult to diagnose and can take ages (It took almost two years for my diagnosis!). By the time that I was diagnosed, I had lost all of my hair, couldn't walk, had open sores (ulcers) in my mouth, on my hands and on my feet; My face was red and swollen from the lesions, I couldn't eat, I couldn't sleep, and every part of my body was either inflammed or in pain!!! And, I was one of the lucky ones because my primary physician was very familiar with Lupus and had just attended a seminar on Lupus!!! Even so, the testing and final diagnosis took forever.
Unfortunately, there are a lot of un-informed doctors who do not know all of the signs, symptoms and tests necessary for Lupus.
One thing that is very, very common is that Lupus is often misdiagnoses as a STD! (mostly syphyllis). But, with such a compromised immune system, I am not surprised that some doctor's assume HIV/AIDS!!! Especially since patients with AIDS have a higher probability of developing Axillary Lyphadenopathy.
Cardiac abnormalities are also common manifestations of LUPUS ad well as pulmonary abnormalities.
With reference to your question about Axillary Lyphadenopathy: Lupus is one of the diseases known to cause this condition. Lymphadenopathy is an abnormality in the size and character of the lymph nodes and is caused by the invasion of either inflammatory cells or neoplastic cells into the node. It results from various disease processes which are known by the acronym "MIAMI", representing: Malignancies, Infections, Autoimmune disorders, Misc and unusual conditions, and Iatrogenic causes. The symptoms are very similar to those of LUPUS - fatigue, malaise, fever, night sweats, wheight loss, muscle weakness, unusual rash, arthralgias.
Do research on Lyphadenopathy and its link to Lupus so that YOU can become knowledgeable and no longer be victimized by lazy doctors who jump to conclusions without running all of the necessary tests. Arm yourself with knowledge and be aggressive with your treatment doctors!! You take control of your health care and do not be afraid to ask questions and demand answers!!
Please keep in touch and let us know how it is going and how you are doing Very Happy

Peace and Blessings
Saysusie