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Thread: Are My Concerns Warranted (Sorry Very Long Post)

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    Question Are My Concerns Warranted (Sorry Very Long Post)

    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.

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    You know, none of us can give you a diagnosis. But there are a few things to say. Your wife has, along with you, suffered way more than most people; you need, and deserve, some rest from it all (not to mention giving all the aches and pains a rest!). I do a lot of online research myself. But what you find out has to be kept in balance, knowing that for everything you learn, there is always much, much more out there. On the other hand, you do not, for a variety of reasons, always get the desired information from any one doctor. You do not say where you live, but I believe you owe it to yourself and your wife to question other medical professionals, especially as there is a good deal in the medical history that has not been explained to you. (To me, this is a cardinal sin of many doctors--and patients.) See the best rheumatologist you can find and explain your concerns above and beyond the back pain. (Rheumatologists are often the clinic's autoimmune and infectious disease experts.) There are vasculitis specialists around as well, in many sub-specialties, but I do not know far you would have to travel. All the best.

    Al

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    Thanks Al. Yes, I know nobody can diagnose her online, but I just hope to get as much input a possible from the real experts, the patients. If it were not for what I learned on my AS support group, I would have never known to pressure my Rheumy to get me on a biologic. Because of Humira, I have pretty much been in remission now for 4 years with only some very minor flares. The clinic my wife is going to next week has one of the best vasculitis clinics in the country. It is the Kirkland Clinic at the University of Alabama at Birmingham. The problem is, will the doctor she sees even consider something as rare as Wegener's.

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    Quote Originally Posted by worried hubby View Post
    Thanks Al. Yes, I know nobody can diagnose her online, but I just hope to get as much input a possible from the real experts, the patients. If it were not for what I learned on my AS support group, I would have never known to pressure my Rheumy to get me on a biologic. Because of Humira, I have pretty much been in remission now for 4 years with only some very minor flares. The clinic my wife is going to next week has one of the best vasculitis clinics in the country. It is the Kirkland Clinic at the University of Alabama at Birmingham. The problem is, will the doctor she sees even consider something as rare as Wegener's.
    Vasculitis specialists are trained to consider rare diseases. And if you do not get satisfactory answers, you must express your concerns and by all means ask questions: But what about this symptom? Why wasn't that test performed? And so on.

    Please let us know what happens!

    Al

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    I am an interesting case, as my weg's specialist states. I am of the 20% of people with wegs that tested neg to ACNA test. My journey to a correct DX was very long and almost cost me my life. The only way that I ended up with the dx was that a team of drs. at CC sent for tissue samples from my lung resection, I had to have done at a local hospital because of lesions in my lungs,because they could not identify thru a lung biospy or anyother scans or multiple tests. With my other symptoms the team came to an agreement of the dx. Please go to a wegs specialist if you don't get good results with the specialist she is going to on Monday. Don't worry about being disrespectful, ask all the questions you want they are working for your wife and you. Good wishes to you and your wife.
    Jana

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    Hi Worried Hubby, welcome. I think it's very loving of you to be looking for answers to your wife's long list of health problems. While we can't diagnose her, I will put in my two cents on some of her symptoms.

    1) Parotid cancer-- Even though she is not in the usual demographic, since the diagnosis was confirmed by numerous specialists I think that is reliable. Her radiation treatments should not be causing GERD however, because they didn't irradiate her stomach or esophagus. Remaining on prilosec for extended periods is not good. Even MDs are finally in agreement with that. She needs to get to the cause of the GERD. Unfortunately MDs don't have anything to offer there. A holistic doctor is your best bet for that.

    2) Sinus and ear infections-- Infections that are unresponsive to antibiotics do make me think of Wegs, though there are many other things that can cause that as well. Based on these symptoms alone, I think it's reasonable to request an ANCA test.

    3) Pain-- this could be a symptom of Wegs but again, many things can be causing it. Severe, migratory joint pain was my only symptom for months.

    4) Other symptoms-- the shooting pains, muscle cramps and facial flushing do not sound like Wegs symptoms to me. The difficulty swallowing and coughing up blood are worrisome and merit an immediate call to her doctor.

    I'm wondering what her diet is like. So many of the things on the list could be due to nutritional deficiencies and imbalances.

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    **Update**

    The doctor yesterday said he is going to biopsy my wife's throat, because of her history. He did not mention Wegener's at all. I am going to my Rheumatologist today, though, and I am going to mention to her about my concerns for my wife (since my wife has already seen her). If the biopsy is negative, then I think we will ask the Rheumatologist or the ENT Surgeon to order an ANCA test for her, just to be on the safe side. Her biopsy is scheduled for a week from Thursday; I will keep everyone posted.

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    Please do keep us posted. You guys have certainly been to hell and back....

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    Quote Originally Posted by worried hubby View Post
    **Update**

    The doctor yesterday said he is going to biopsy my wife's throat, because of her history. He did not mention Wegener's at all. I am going to my Rheumatologist today, though, and I am going to mention to her about my concerns for my wife (since my wife has already seen her). If the biopsy is negative, then I think we will ask the Rheumatologist or the ENT Surgeon to order an ANCA test for her, just to be on the safe side. Her biopsy is scheduled for a week from Thursday; I will keep everyone posted.
    As I noted on another thread, a WG diagnosis cannot be made from the ANCA titer alone. It needs to be in conjunction with symptoms and a biopsy. On the other hand, the ANCA test will often alert the pathologist to the possibility of WG; otherwise, they may not look for the connections. I would ask for the ANCA test first, just for this reason.

    Al

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    It might also be helpful to ask for a second opinion from a large specialty clinic on the biopsy since expertise of pathologist is important in getting diagnosis correct. We have got second opinions from Mayo that were very different from local clinics and eventually they proved correct.

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