Please forgive me for this being so long winded, but I want to tell everything so I can get as much input as possible. As my username suggests, I am worried about my wife possibly having Wegener’s. If it turns out that she does not, let me apologize up front for taking up your time.

My wife is 44 years old. She and I have been married for 6 years. Several years before we got married (over 10 years ago), she had a lesion on one of her parotid glands. The Surgeon said that he thought it was just a cyst, and he removed it. The Pathologist said it was cancer though. The Surgeon was so shocked, because he said her demographic – 30-40 year old females - hardly ever have salivary gland cancer. He, therefore, sent it to numerous other labs all over the country, and they all concurred that it was cancer, so she had radiation treatments and it appeared that all was well. Then, just before we started dating 7 years ago, she had a major sinus ‘infection.’ Antibiotics did nothing, and her ENT did major sinus surgery. The way my wife explained it, he had to completely ‘scrape’ out both sides of her sinuses, and he said he had never seen such a bad ‘infection.’ I really am not sure what the pathology report said about any tissues that were removed from her sinuses, but the ENT said that the surgery was a success. She had had many allergies when she was younger and took more allergy shots after the surgery. She still has sinus infections pretty frequently, though none so serious.

During the years we have been married, she has literally had one health problem after another. She had to have a total hysterectomy because of terrible bleeding and pain. The OB-GYN said she had a mass in her uterus that was probably just a benign cyst that he thought he could remove. When he got in though, he could not find it and had to do the total hysterectomy. Pathology showed no cancer. She had already had a major hernia repair in her lower abdomen and the hysterectomy messed this up and she has had to have it repaired twice since then. She had a marble sized lump removed from the back of her neck/shoulder. Since she had the cancer, she is very keen on any lumps. It was benign, but I do not remember if the pathology report said it was a granuloma or not (I think it was a lipoma). She has had chronic back problems. Her knees hurt. She has terrible problems with sleeping because of pain. She says sometimes she gets terrible ‘shocking’ feelings in her legs. She also has many episodes of muscle cramps all over her body, in places you do not usually get cramps. She has had terrible pain in her thumb joint and has been told that she really needs surgery on it. Sometimes, her face will just turn completely red for no apparent reason (tested negative for ANA). This happens all the time. She has mouth sores and terrible dry mouth, which she attributes to the radiation. She has terrible water retention and must constantly take diuretics. Also, for the past several years, she has been constantly battling high blood pressure and has had to change meds many times to keep the hypertension under control. All her urinalyses have been pretty normal, though. She is tired all the time and says sometimes she doesn't even feel like getting out of bed, but she continues to work.

Fast forward to a couple of months ago, she had a terrible episode of what her PCP said was gout (first ever). Then, she had what she thought was just another sinus infection. As it got worse, she started feeling like she couldn’t breathe, especially at night. She said she felt like she was wheezing and that she wondered if she had pneumonia. Her ear also started hurting. She went back to her ENT, who had her chest x-rayed. He said it looked normal, but upon looking in her ear, said it was really badly ‘infected.’ After a round of antibiotics did not help, he put a drainage tube in. A couple of weeks later, she went back because she still could not hear anything out of that ear, and he did some more imaging and told her she had developed mastoiditis and would need surgery. She had the surgery, and he seems to think it was a success, though her hearing has still not returned to normal. A few weeks later, though, she discovered another ‘lump’ on the side of her neck. It was on the same side as where she had the parotid removed and had radiation. She was obviously worried, so she had the ENT send her for a PET scan. The PET scan showed nothing at all where she felt the lump, but it did show an area of increased uptake on the opposite side of her throat. The ENT then sent her for a CT scan. The CT confirmed that there is something in her throat at the very base of her tongue along with swelling in the ‘lingual tonsils’. The ENT said she needs a biopsy, but because of the location, he has scheduled her to go to the large teaching university hospital nearby and see a specialist in head and neck cancers who uses a robotic technique to do the biopsy. She has this appointment Monday. She is also now complaining about not being able to swallow, and she has been coughing up some blood. I forgot to mention that she has chronic GERD and takes Prilosec daily, which she attributes to her former radiation treatments. She is obviously worried about it being cancer, because of the parotid and her radiation treatments. After looking at information online, I am worried it could be Wegener’s, even though it has not been mentioned at all by any of her doctors.

I am a College Librarian who specializes in online research. I also happen to have a very rare autoimmune disease myself, called Ankylosing Spondylitis. Through all our time together, I have thought that so many of her symptoms were very “autoimmune-like.” I even convinced her to go to my Rheumatologist about her back and joint pain. That is where she had the ANA, but I really don’t know if my Rheumy even considered Wegener’s. I also don’t know if she did an ANCA; I don’t think so, though, just the ANA, ESR, and CRP. The Rheumy seemed to think the joint problems were mechanical in origin. My wife tends to think that I am too worrisome and tend to rely too much on online sources. She is also a Registered Nurse, and refuses to even discuss anything that remotely might be considered ‘self-diagnosis.’ I suppose it is because she doesn’t want to look disrespectful to the doctors. Do you think I am being unreasonable in considering that she could have Wegener’s? I mean, there are a lot of coincidences in her history that sound an awful lot to me, a layperson, like symptoms of this disease. This doctor she is seeing Monday is a world-renowned head and neck cancer specialist, so I would hope that he would know what to look for in the biopsy to determine if it is cancer or something else. I obviously do not want it to be cancer, but what if the biopsy shows it is not cancer and then he too doesn’t even consider Wegener’s? I brought this up with her for the first time yesterday, and she thinks I am crazy and that I spend too much time reading things online, and I highly doubt she would even want to discuss this with the doctor Monday. What do you think? Am I being unreasonable? I am obviously a very… worried hubby.