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Thread: Possible Wagner's but still in limbo

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    Default Possible Wegner's but still in limbo

    Hi everyone, I've been lurking on this board but for a few days so I thought I would introduce myself. I'm 33 years old and I've had weird autoimmune symptoms since I was 19. I've had several episodes of pleurisy where a CT found lung nodules but I never had a firm diagnosis of what it was, was just told to take ibuprofen and eventually the nodules would go away.

    I had a nodule on my eye for a while and saw an optometrist who did a biopsy. The only thing which showed up was that there was a high amount of white blood cells in the nodule. Then, after the biopsy the nodule never grew back and my pain eventually went away.

    At 30, I suddenly had a flare of horrible joint pain. I went to see a rheumatologist and the only abnormal blood test was my CRP was slightly high. Because of the level of pain, she put me on Pred and methotrexate which immediately helped. I weaned myself off pred in a few months and continued methotrexate for a few years. Then, a new rheumy I saw felt I had had reactive arthritis due to pneumonia and didn't need to be on methotrexate so I stopped.

    About 9 months later, I was feeling fine but suddenly developed muffled hearing in 1 ear. After that began the most hellacious series of health problems Ive ever had; pain, ear infections, more hearing loss, very loud tinnitus, both ears affected. This all began Sept. 2019. I had sinus surgery, eustachian tube dilation, and tubes put on. Despite the tubes, my hearing loss continued to get worse, and I have fluid leaking out of my ear nightly. My ENT didn't know what else to do and referred me to an otologist. At this point I've developed numbness in my tongue, sores in my nose, and feel generally crappy every day. After about a month of unsuccessfully treating it with more antibiotics my otologist said he felt it may be Wegner's granulomatosis. He sent me for testing and so far the things which have turned out abnormal have been ESR of 51, trace blood in the urine, and a CT found a lung nodule. My ANCA was positive but the subsequent tests for specific antibodies were negative.

    I'm awaiting to see a new rheumy and a pulmonologist but it will be months before my appointment. Meanwhile, I'm struggling to keep my job with this huge hearing loss and trying to figure out how to cope with the tinnitus, which has been my most bothersome symptom. I'm scared that because of how long I have to wait to start treatment I won't regain my hearing.

    Thanks for reading this. I have to say I really appreciate the positivity on this message board. I visited a support site for tinnitus for a while and the level of negativity on there really brought me down and made me feel like my life was over with this affliction.
    Last edited by Solose; 01-22-2020 at 03:30 PM.

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    Default Re: Possible Wagner's but still in limbo

    Welcome. Your collection of problems certainly SOUND like they could be wegener's. If Wegener's is high on the suspect list then I would be very concerned about having to wait months to see a rheumy. Wegener's can advance quite quickly and unexpectedly - especially if it is not getting primary treatment for Wegener's . Is there some way you could manage to get to a qualified specialist before then? It could be that you will be fine for the next few months but if you do have Wegener's and it flares up you will need to seek out a specialist very quickly anyway. I myself would get tremendous peace of mind for the next few months if you could rule it OR rule it in and begin treatment. As you have also said. I know it's difficult to get seen quickly these days but if it were me I would really focus on that. Where are you located?
    You mentioned sinus surgery- did they do a sinus biopsy at any time? Sinus biopsy is high on the list for getting WG diagnosis. I myself was diagnosed that way and all my blood numbers are usually low- and not in synch with my actual condition.
    It sounds like you are making progress toward getting diagnosis and then getting on appropriate treatment. Absolute gold would be being able to see one of the Wegener's gurus that the Vasculitis Foundation has on their list. In a difficult case like yours where numbers are elusive their extensive experience is invalualble for someone like you- or me . hahaha

    Perhaps you could come up with a small list of the experts close to you that you can make appointments with and then also get on their cancellation list. I have been successful with this technique more than once to get seen sooner than I was initially told that I could. Even if you were on just one cancellation list it would put you in place to get some good luck. I have been saving up my good luck lately- I'll send you some.

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    Default Re: Possible Wagner's but still in limbo

    Thank you for all the info. When you had your sinus biopsy, how did you about having it ordered, was it the rheumatologist or ENT who performed it? I made an ENT appointment to ask for a possible biopsy of the nodule in my nostril. When I had the sinus surgery done I was only having issues with my ears. The maxillary sinus was occluded with an infection and my ENT said he just saw a lot of polyps. I'm just not sure if I need to see the rheumy first to get the biopsy ordered.

    I live in St. Louis, MO and there is a Vasculitis clinic associated with Washington University here, I'm just having a hard time getting my otologist to refer me there
    and my PCP is affiliated with a different healthcare system so she can't refer me to them. I see my otologist this Friday I will try politely demanding the referral, lol.

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    Default Re: Possible Wagner's but still in limbo

    My biopsy was ordered by the ENT. I think this is the usual route. I like your idea of polite demand. One of my great lessons of this illness is becoming my own strong advocate. I have had this illness for over 40 years now and I could literally write a book filled with just my experiences of when I had to steer testing and treatment into a direction that was my best interest. Many doctors are over worked (truely) and I see it as my job to be as informed as I can to work with them in my best interest. Ocassionally, polite demand becomes necessary.

    One of my favorite experiences (only in retrospect) was during a time when my primary doc was repeatedly cutting short our visits because he was in a hurry. I did my part every time. I wrote everything down that I needed to go over ahead of time so as not to waste ANY of his time. I had a list of things to go over- important things.
    This time my doc gets up and says "Well, I'm sorry but I've got other patients to see" . I had been there maybe ten minutes and my list was only half done. I had done NO chit chat, now waste of time at all.
    So when he got up and said this and started for the door I pointed to his chair and said "Sit down, we are not done yet."

    It shocked me as much as it did him. I am not an assertive person normally but I wasn't going to be treated like that. I had reached my limit.
    To his credit, he went back and sat down and said "ok, what have you got?"
    We finished my list fairly quickly and he was able to go see other patients.

    It is YOUR health, YOUR life, they work for YOU. They are there to help YOU. Yes, it ALL about YOU. YOU are paying them to help YOU.
    Ok, I'm getting wound up again. hahaha I hope things go well for you and you are able to be seen sooner rather than later.
    I can say with certainty that if I had done nothing but listened to my doctors all these years, done what I was told and didn't question their ideas- I would not be alive. Several times over , I would be gone.

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    Default Re: Possible Wegner's but still in limbo

    I guess every situation is different; my nasal biopsy, which proved my dx, came about through a series of events. I had been going to a well-respected ENT in my town for a series of atypical, for me, ear and sinus infections which were chalked up to allergies but were really WG, and treated with a series of different antibiotics along with 10-day tapers of prednisone.
    After a couple of years my lung involvement began. The ENT had referred me to a pulmonologist, who had me get xrays for what I thought might be pneumonia. He saw something on the xray that he thought might be endocarditis. He was going on vacation but wanted me seen, so put me in the hospital overnight for some blood tests and a CT scan. At that point I was in pretty bad shape so was glad to be there. The doc overseeing my case was great; I don't know if my blood work was conclusive, but the CT scan suggested Wegeners, which I had already read about on the internet. I was to take that info back to the pulmy.
    Almost as soon as I got home, maybe the next day, I noticed my saddle nose for the first time, and I knew it was a symptom of WG. I got a quick appointment with the ENT by telling his nurse what was going on. She and the doctor stayed late to do my biopsy on the spot in his examination chair. We all knew I had WG, and he was very apologetic for not catching it sooner. I went home and started reading this forum.
    But when I went back to the pulmy a week or so later, he pooh poohed the idea of my having WG, because the blood work didn't make a strong case for it. I told him what had gone on with the ENT, and I showed him my nose. He looked rattled, and went and called the ENT. The biopsy results had just come in and I had WG. So since the ENT said he didn't treat WG, this pulmy was the one who started my treatment. Someone had to, and he did a good job. I've moved on since then.
    I guess l live in a small enough town, yet large enough, that there are lots of doctors but not a lot of specialists, yet it's not too hard to get an appointment with one. But it is tightening up. Me2's idea of getting signed up for cancelations is a good one, I'm sure. I don't recommend getting a saddle nose in order to know you have WG. And in lieu of getting an appointment, if things get really bad, you can go to the ER, where you might get admitted and be given the attention you deserve. Maybe they could even expedite a referral to a good specialist. That's how I got hooked up with my ENT. I had such a painful bilateral earache/infection and nothing had helped, so I went to the ER, where he prescribed something and gave me an urgent referral.
    Anyway, welcome to the forum. This is really the best place to go for information, support and friendship. Please keep us updated on how things go.




    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 01-23-2020 at 03:07 PM.
    Anne, dx'ed April 2011

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    Default Re: Possible Wegner's but still in limbo

    Quote Originally Posted by Solose View Post
    Hi everyone, I've been lurking on this board but for a few days so I thought I would introduce myself. I'm 33 years old and I've had weird autoimmune symptoms since I was 19. I've had several episodes of pleurisy where a CT found lung nodules but I never had a firm diagnosis of what it was, was just told to take ibuprofen and eventually the nodules would go away.

    I had a nodule on my eye for a while and saw an optometrist who did a biopsy. The only thing which showed up was that there was a high amount of white blood cells in the nodule. Then, after the biopsy the nodule never grew back and my pain eventually went away.

    At 30, I suddenly had a flare of horrible joint pain. I went to see a rheumatologist and the only abnormal blood test was my CRP was slightly high. Because of the level of pain, she put me on Pred and methotrexate which immediately helped. I weaned myself off pred in a few months and continued methotrexate for a few years. Then, a new rheumy I saw felt I had had reactive arthritis due to pneumonia and didn't need to be on methotrexate so I stopped.

    About 9 months later, I was feeling fine but suddenly developed muffled hearing in 1 ear. After that began the most hellacious series of health problems Ive ever had; pain, ear infections, more hearing loss, very loud tinnitus, both ears affected. This all began Sept. 2019. I had sinus surgery, eustachian tube dilation, and tubes put on. Despite the tubes, my hearing loss continued to get worse, and I have fluid leaking out of my ear nightly. My ENT didn't know what else to do and referred me to an otologist. At this point I've developed numbness in my tongue, sores in my nose, and feel generally crappy every day. After about a month of unsuccessfully treating it with more antibiotics my otologist said he felt it may be Wegner's granulomatosis. He sent me for testing and so far the things which have turned out abnormal have been ESR of 51, trace blood in the urine, and a CT found a lung nodule. My ANCA was positive but the subsequent tests for specific antibodies were negative.

    I'm awaiting to see a new rheumy and a pulmonologist but it will be months before my appointment. Meanwhile, I'm struggling to keep my job with this huge hearing loss and trying to figure out how to cope with the tinnitus, which has been my most bothersome symptom. I'm scared that because of how long I have to wait to start treatment I won't regain my hearing.

    Thanks for reading this. I have to say I really appreciate the positivity on this message board. I visited a support site for tinnitus for a while and the level of negativity on there really brought me down and made me feel like my life was over with this affliction.

    If you can swing it some how I would get very active in seeking some expert help real quick. I saw many doctors for various GPA symptoms for over two years and finally it got so worse I nearly died from it and ended up with serious damage including deafness, kidney damage, lung damage, loss of balance and and it made my diabetic neuropathy much worse. Then it took almost a year in the hospital and nursing home to even begin to regain much function and another year before i reached my new normal max so I could get by in light assisted living situation. I think earlier and more prompt treatment would have prevented much or most of the damage.

    I remember once years ago when i was was being brushed off my a local small town doctor who had an important golf date or something, I went home and called the world famous Mayo clinic, and asked about getting some help and then they replied how soon can you get here. I went early the next morning and got seen. The world class clinics have their reputations for a reason. One way to get help from those facilities is to go to their ER facilities. You will most likely see residents or interns but they can and will usually consult with the staff experts and give you the correct treatment. If you aren't close to some of the expert GPA facilities or doctors listed on the Vasculitis web site, then look at the nearest University with a big medical school since they usually like difficult and challenging cases like GPA since we are a rare commodity and more interesting.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Possible Wegner's but still in limbo

    DRZ, I really like what you've said here. I had to tear up just reading it as some of my experience is quite like yours. So much suffering can be prevented with prompt appointments and treatment.

    Once, when I was desperately ill and not able to get an appointment with my Rheumy I knew I had to do something. I was sinking very quickly and I knew it.
    I knew I could not wait the several weeks they told me I had to wait. So, the next morning I got up and went to his office and sat in the waiting room. The nurse saw me there and asked if I had an appointment (for that day). I said "No, I don't but I can't wait for one. I'm going to sit here until I can see someone." I was so desperate.
    They were able to squeeze me in that day around noon. And, to their credit, did not give me any grief over just showing up like that. Some times you gotta do what you gotta do.

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    Default Re: Possible Wagner's but still in limbo

    Quote Originally Posted by me2 View Post
    My biopsy was ordered by the ENT. I think this is the usual route. I like your idea of polite demand. One of my great lessons of this illness is becoming my own strong advocate. I have had this illness for over 40 years now and I could literally write a book filled with just my experiences of when I had to steer testing and treatment into a direction that was my best interest. Many doctors are over worked (truely) and I see it as my job to be as informed as I can to work with them in my best interest. Ocassionally, polite demand becomes necessary.

    One of my favorite experiences (only in retrospect) was during a time when my primary doc was repeatedly cutting short our visits because he was in a hurry. I did my part every time. I wrote everything down that I needed to go over ahead of time so as not to waste ANY of his time. I had a list of things to go over- important things.
    This time my doc gets up and says "Well, I'm sorry but I've got other patients to see" . I had been there maybe ten minutes and my list was only half done. I had done NO chit chat, now waste of time at all.
    So when he got up and said this and started for the door I pointed to his chair and said "Sit down, we are not done yet."

    It shocked me as much as it did him. I am not an assertive person normally but I wasn't going to be treated like that. I had reached my limit.
    To his credit, he went back and sat down and said "ok, what have you got?"
    We finished my list fairly quickly and he was able to go see other patients.

    It is YOUR health, YOUR life, they work for YOU. They are there to help YOU. Yes, it ALL about YOU. YOU are paying them to help YOU.
    Ok, I'm getting wound up again. hahaha I hope things go well for you and you are able to be seen sooner rather than later.
    I can say with certainty that if I had done nothing but listened to my doctors all these years, done what I was told and didn't question their ideas- I would not be alive. Several times over , I would be gone.
    Solose,
    You have been given the most thorough, experienced advice that all the money in the world could not buy. These people are speaking to you from the heart and sharing all the good, bad and ugly that could happen. I implore you. I beg you. Listen to them. They are alive today and want to help you. Do you have to have a reference to get into Washington? What if you just walked in the door with your records and appealed to them with how desperate you are? Do anything you can to be seen by the best as fast as possible. As me2 says this really is your LIFE.
    Masha

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    Default Re: Possible Wagner's but still in limbo

    I had an appointment with my otologist on Friday that ended up being 3 hours. In the last 2 weeks since I saw him, I had a dramatic sensorineural hearing loss in my previously "good" ear. He is still not sure if this is Wagener's or something else but did steroid shots into my ears to try to recover some hearing. This was pretty crushing as previously I mainly had conductive hearing loss and I still held out hope that with treatment my hearing could come back and the tinnitus could go away but sensorineural hearing loss is permanent.

    I also did finally got the referral to a rheumy at the Vasculitis clinic at Washington U that's Feb.4 as well as a pulmonology appointment in 4 weeks. I also have an MRI scheduled. At this point I'm hoping it's Wagener's or something else autoimmune because if not we're back to square 1 and the CT report of my lungs said the nodules I have are either inflammatory or cancerous, I would rather it be autoimmune than cancer.

    I am tentatively hopeful for that rheumy appointment. What I'm afraid will happen is he will say we need to wait until a biopsy positive for GPA comes back. I don't have my ENT appointment until Feb. 10 and pulmonary Feb.18. I'm sure they can't do the biopsy at the appointment so that will be more wait time. Meanwhile, I'm afraid I will go totally deaf. I feel like the rheumy will not consider hearing loss an emergency enough to start treatment without any definitive proof of GPA, but to me it is. I realize it's not as bad as some of the things that could happen with GPA and it's not life threatening, but it's really turned my life upside down. I just finished an academic program in a field where good hearing is essential and even with a hearing aide I struggle a lot at work.

    How have you all coped with hearing loss that comes with this disease? Has anyone had sensorineural loss that got better with treatment for GPA? After I had the steroid shots I did feel like my hearing improved somewhat.

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    Default Re: Possible Wagner's but still in limbo

    I don't know a lot about the hearing loss issues. I myself had hearing loss that has gotten better but I don't think it's the same type as you have. I have had neurological cerebellum problems that caused me serious problems for a couple of years that also improved. I know it's not the same thing as what you are talking about. I take Lion's Mane mushroom supplements that are supposed to help with neurological healing. I have no idea if it works but there does seem to be science that supports the idea and the cost is minimal for me to try it.
    That is great news about your upcoming appointment. My Rheumy has at times gotten me seen sooner by ENT. My ENT has normal appointments booked out months in advance. It's crazy.

    Of course I always jump on the cancellation list too to try and get in sooner. I've also gotten the number of the ENT's nurse and called her directly and explained my situation. She, at times, has been able to help me. It couldn't hurt to talk. They are more inclined to help a voice on the phone than a scheduled appointment.

    Thinking outside the box a bit- I wonder when you talk to your Rheumy and share your concerns about further hearing loss or other problems (to your already long list) might you be a candidate to start something like Cytoxan immediately. Treatment can be started based on symptoms alone - without biopsy or other numbers. It's not common, certainly not what any would like, but can be necessary. It would appear to me that it's a balance of risk that you may treat an illness you don't have for a few weeks or get further damage because you DO have it and it's not receiving primary treatment. I don't know what the answers are and certainly your Rheumy is the one who really decides. But, I have found myself with a tricky balancing act before and asked the Dr to let me make my own choice - and that I would accept the risk in the direction I wanted to go. Of course, sometimes I was right, sometimes I've been wrong- but in EVERY case I'm the one who pays the price. It always boils down to this for me- I would rather make my OWN mistake then make someone else's. It's not easy. It's not fun. I have never regretted at least doing what I thought was best at the time. All too often , that's the situation this illness hands us.

    For myself, (and I only know for myself) , Cytoxan works very quickly. Often, for me , in the first day I can feel the action of it in whatever area WG is attacking me. I don't know if knowing this helps you at all - but I feel like I have to share my experience and hope you find your own best way. It seems like you are getting close to really getting a handle on your situation. You are doing a great job working your way through this I think. Keep pushing. Follow your instincts. (and of course, check them with reason)

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