Anyone have the same lung problem?

[Lilly]

I was diagnosed in 1990. I did have lung involvement from the beginning. But Cytoxan and prednisone made all tumors shrink and never had any problems after that with my lungs. Then 3 yrs ago I began having coughing, and chest pain. I had breathing treatments, ct scans, inhalers....I was diagnosed with asthma, possible pneumonia. CT Scan showed spiculated branch like objects that are not considered to be caused by wegeners, or cancer. No new tumors. So I am now on a daily inhaler. I also has a blood clot in my lung last year. Still taking blood thinners. But my energy level is so low! If I do any housework, I become hot, sweaty, nauseaus, and have to sit and wait for it to pass. I have actually been stubborn and pushed myself until I actually vomited. (sorry, that's gross) But I am wondering if its my lungs that is causing this total lack of energy. It has only gotten this bad in the last 3 years. I am losing my independence, I cannot physically go places like visit friends any distance away, unless I have my sister, parent, with me. I cant trust myself to drive safely. I do not cough up any blood or anything else scary. Just some build-up from my throat sometimes. When I lay down at night, the back of my throat gurgles and makes me cough....like fluid gets in my throat when I lay down. Only at night. But I cough daily, pretty hard, and drs can find nothing that is an issue or concern. I know that wegeners causes fatigue, and we have to use our spoons wisely....but I'm wondering why I'm getting winded and nauseaus so quickly, and I cannot even enjoy a walk on the beach or a couple hours of gardening? Anyone else having issues similar? Thanks for any advice

[Pete]

Hi Lilly,

I feel sad about your fatigue and lung issues.

You didn't say what meds you're taking, but some do have fatigue as a side effect. When I was on mtx, it got to the point where I was pretty wiped out for 24-48 hours after taking it.

Another thought -- have you had a pulmonary function test? Have you been checked for tracheal stenosis? It seems you're not getting enough air.

I hope your docs can get the problem identified -- and corrected.

[annekat]

Ditto to everything Pete said. I wish they could figure out the cause and give you some relief so you can enjoy your summer and get back to your former improved condition.

Sent from my MotoE2(4G-LTE) using Tapatalk

[andrew]

Yep you're not getting enough air which is probably why you're feeling so crap - OR it could be those objects in your lungs. Are you seeing a Pulmonologist? If so then perhaps try another one. Take all your test results/scans etc and get a second opinion. Your current one can't just tell you you've got these things in your lungs and send you on your way with an inhaler. Something has definitely changed. Needs to be chased up. Good luck and hope you get a fresh spoon delivery often :)

[Jaha]

I'm wishing you all the best for finding out some answers about your lungs. I have COPD and have episodes of exhaustion, pain in lungs, nausea,dizzness, short of breath and terrible sweating. It is really hard to be real active at times. You do need to see a pulmonologist to get a pulmonary function study, that will tell them whether it is Wegs or COPD(which includes asthma). Take care of yourself!

[im so blessed]

Hi Lilly, Your symptoms remind me very much of my tracheal stenosis. Have you been scoped for this? I have very low energy and get the hot, dizzy, almost vomiting feeling if i do too much, which i think is caused by lack of oxygen. I do not have lung issues, that we know of. But also the cough, gurgling at night. It all sounds very familiar. I hope you have an ENT who could check you for this if you havnt been checked recently. Im so sorry tho, for the weariness your dealing with. Hang in there! Please keep us posted.

[Alysia]

Dear Lilly,

I am so sorry that you suffer so much. Something wrong is going on there, and it needs to be checked and treated.

Many times docs said about things that they are not wg related when actually they are.

My beautiful Phil had shortness of breath most of the time, he was coughing a lot and vommiting as a result. Many times it was the result of lungs infections and/ or wg flares. He also had bronchial stenosis and bronchiactesis.

Do you have mucous from the coughing ? What color ? Did they take sputum samples ? Did they do a bronchoscopy with samples ? How are your blood tests ? Are you having other wg symptoms ?

Hang in there. Please update us. Sending prayers and much love ❤❤❤❤

[Susan55]

Hi Jaha
Just now found this post and I can relate toLilly and your self. Jaha, a lot of what I am experiencing is what your saying. pain in lungs (I call it throbbing), nausea, dizziness, short of breath and sweating. I also see stars all around me not sure if that means not enough oxygen? But yet both Rheumy and Lung Dr. say my lungs sound fine. I also take Spirvia and Advair daily for about 10 yrs now. They say I have mild COPD, but just wondering if it has gotten worse wince the gpa? My Lung Dr. said Friday well you just had breathing test done (my yearly test) 3 months ago we can wait another 9 months to repeat it.
Now, I want more answers from my Rheumy. Wondering if a biopsy would be the next step in helping to answer some of my questions and come to a conclusion as to why I get throbbing in my lungs



I'm wishing you all the best for finding out some answers about your lungs. I have COPD and have episodes of exhaustion, pain in lungs, nausea,dizzness, short of breath and terrible sweating. It is really hard to be real active at times. You do need to see a pulmonologist to get a pulmonary function study, that will tell them whether it is Wegs or COPD(which includes asthma). Take care of yourself!

[Susan55]

Hi Lilly

Yes, I have mild COPD for about 10 yrs now. I think this is why I am having a bit more symptoms then others. CT scan shows mild copd and some thickening of the bronchial tubes, but doctor's haven't said much to me having this with GPA. I get lots of throbbing lately on both sides of my lungs and SOB, dizzy, nausea, sweats etc.
I think I do need a biopsy of the lungs, but not sure just how invasive this is to do.
Hope your feeling better and got some answers

I was diagnosed in 1990. I did have lung involvement from the beginning. But Cytoxan and prednisone made all tumors shrink and never had any problems after that with my lungs. Then 3 yrs ago I began having coughing, and chest pain. I had breathing treatments, ct scans, inhalers....I was diagnosed with asthma, possible pneumonia. CT Scan showed spiculated branch like objects that are not considered to be caused by wegeners, or cancer. No new tumors. So I am now on a daily inhaler. I also has a blood clot in my lung last year. Still taking blood thinners. But my energy level is so low! If I do any housework, I become hot, sweaty, nauseaus, and have to sit and wait for it to pass. I have actually been stubborn and pushed myself until I actually vomited. (sorry, that's gross) But I am wondering if its my lungs that is causing this total lack of energy. It has only gotten this bad in the last 3 years. I am losing my independence, I cannot physically go places like visit friends any distance away, unless I have my sister, parent, with me. I cant trust myself to drive safely. I do not cough up any blood or anything else scary. Just some build-up from my throat sometimes. When I lay down at night, the back of my throat gurgles and makes me cough....like fluid gets in my throat when I lay down. Only at night. But I cough daily, pretty hard, and drs can find nothing that is an issue or concern. I know that wegeners causes fatigue, and we have to use our spoons wisely....but I'm wondering why I'm getting winded and nauseaus so quickly, and I cannot even enjoy a walk on the beach or a couple hours of gardening? Anyone else having issues similar? Thanks for any advice

[Lilly]

Thank you all for the response and information.....I am sorry that I did not get back to you all sooner. Each one of you answered questions that were very helpful! And one problem for me, is that I was diagnosed in Mobile, Al. and treated by my team of doctors at that time for 10 years, because my husband got a job in middle Alabama, 4 hours north. So I had to transition to a whole new set of doctors. Lucky for me, I was very close to the University Of Birmingham, UAB. A top college and Medical Center on the cutting edge of many studies, and procedures and amazing doctors. In those 10 years, I had a lot of doctors interested in me, and had many studies of my lungs, and kidneys, and sinus and nose reconstructive surgery for saddlenose. One thing I did was see an Otorlaringologist. As I look back at my records, I saw him often, trying to stop smoking, and having bronchoscopys, and other procedures to study my lungs. I also had a webbing removed from my throat that formed and cut my breathing down to a hole the size of a straw! But at that time, I never had issues breathing from lung problems. I did not smoke very much, but the little I did smoke was stupid of me. Anyway, I battled wegeners in the 10 years I lived there, and then my husband and I divorced. By this time, I am suffering from needing a total knee replacement, and going through a divorce and trying to keep doctors in Birmingham while living in Mobile with my parents. I had my total knee in 2010. It went very well. I found doctors in Mobile who are amazing, and have been treating me since 2010. I have all specialists, an EENT, Eye specialist, Pulmonary Cardiologist, Rheumatologist, and a PA. My breathing issues began when I stopped smoking. I was not a daily smoker, but I would smoke if others were around. I was a Bum Smoker!! But when I stopped I began having issues. So I began seeing the lung doctor. At first, it was just a lot of coughing, and he kept up with a CT scan a year to have a running record of my lungs. I had infections, and even got MRSA that I had treated by 2 very strong meds that I did myself through a PICC line. That lasted a month, and since then things just keep changing. I have had testing 2 or 3 times for seeing how much oxygen I am getting when I breath, and have had all the tests that you all mentioned. But each time the tests came back lower than normal limits, but not bad enough to be worried. My ct scans show some issues that are in my lungs, but are most likely damage from a little bit of everything. The results don't look like anything from wegeners, nor do the look like any sort of cancer. They have remained unchanged for the last 3 years. Last year is when I really started having issues breathing. I was treated for asthma, took breathing treatments at the dr office, at home, etc. Everything loosened up and I coughed up, but still I was SOB. Then last year I got a DVT in my left leg from having a broken foot and being sedentary. After dealing with that, 2 weeks later I became so SOB that my lung dr sent me to the ER, and I had a blood clot in my lung. Problem is, there is no way to tell if it was from my DVT, or if it was wegeners related. So, as of now, my blood clots are gone, I am taking blood thinners, (elequis) and I take Spiriva daily. So I seem to get lung infections very easily....and I feel like eventually, whatever is going on in my lungs will be resolved, but while I wait, I am having the issues like yall. I have learned to adjust myself and the way I do things so that I only push myself as far as I can. My EENT does not see any throat issues that could be causing my SOB. I see him every month or two, and he helps me clean out the back of my sinus cavity that gets built up, but I cant do anything about. He puts tubes in my ears, takes them out, etc....So, at this time I am just taking it daily. I know that I will probably get another breathing test if needed, to see if my lung capacity has changed. I just get so aggravated of the limitations that my lungs put on me!!!! I cant believe how much I write. This is ridiculous!! I'm a talker too, so my Daddy has always said that if he put tape over my mouth, the top of my head would blow off!! That's how much I talk! I just explain every detail, that is my problem. Anyway, If you did just read the "book" I just wrote here, thank you for your time! I will be in touch, and I do hope you all are doing well....we are warriors!!

[Lilly]

Hello to you all who read my posts and gave me some great advice. I have finally made an appointment with my EENT for Monday, the 29th. My main concern is my throat.....I want to see if all my problems I felt were "lung" related, may actually be my throat. From your posts, it sounds very likely that is what it could be. Thank yall very much, and I will be in touch, and keep you all posted after my appointment. Blessings and Love to you all.....

[hellojulie]

I was diagnosed in 1990. I did have lung involvement from the beginning. But Cytoxan and prednisone made all tumors shrink and never had any problems after that with my lungs. Then 3 yrs ago I began having coughing, and chest pain. I had breathing treatments, ct scans, inhalers....I was diagnosed with asthma, possible pneumonia. CT Scan showed spiculated branch like objects that are not considered to be caused by wegeners, or cancer. No new tumors. So I am now on a daily inhaler. I also has a blood clot in my lung last year. Still taking blood thinners. But my energy level is so low! If I do any housework, I become hot, sweaty, nauseaus, and have to sit and wait for it to pass. I have actually been stubborn and pushed myself until I actually vomited. (sorry, that's gross) But I am wondering if its my lungs that is causing this total lack of energy. It has only gotten this bad in the last 3 years. I am losing my independence, I cannot physically go places like visit friends any distance away, unless I have my sister, parent, with me. I cant trust myself to drive safely. I do not cough up any blood or anything else scary. Just some build-up from my throat sometimes. When I lay down at night, the back of my throat gurgles and makes me cough....like fluid gets in my throat when I lay down. Only at night. But I cough daily, pretty hard, and drs can find nothing that is an issue or concern. I know that wegeners causes fatigue, and we have to use our spoons wisely....but I'm wondering why I'm getting winded and nauseaus so quickly, and I cannot even enjoy a walk on the beach or a couple hours of gardening? Anyone else having issues similar? Thanks for any advice

Hello Lilly, I was diagnosed in August 2017, had the initial preds and apheresis and retuxan, started cellcept, but went into a flare anyway about a month after the last retuxan infusion - rheumy doc immediately took me off the cellcept (since it obviously was not preventing flare) and scheduled another retuxan set, with another to follow in three months. In the meantime I was having all your same symptoms and I was settling in for being sick forever. Coughing up a storm (productive) gurgling in my throat at night (scary!) lots of extreme fatigue. My daily meds are preds and blood pressure meds. I discovered two things: I was taking two blood pressure meds at the same time and this was causing very LOW pressure which makes one very tired, and two, I was actually having a bout of the flu, thinking it was Wegs. I feel fantastic today and am cough-free, taking the meds in a different order which is helping a lot. My fantastic pulmonolgist was so kind about this, and my rheumy too. I feel better than since August. I sure hope this turns out to be your case, that is, some explanation other than Wegs. Prayers your way.
hellojulie

[Lilly]

Hello Lilly, I was diagnosed in August 2017, had the initial preds and apheresis and retuxan, started cellcept, but went into a flare anyway about a month after the last retuxan infusion - rheumy doc immediately took me off the cellcept (since it obviously was not preventing flare) and scheduled another retuxan set, with another to follow in three months. In the meantime I was having all your same symptoms and I was settling in for being sick forever. Coughing up a storm (productive) gurgling in my throat at night (scary!) lots of extreme fatigue. My daily meds are preds and blood pressure meds. I discovered two things: I was taking two blood pressure meds at the same time and this was causing very LOW pressure which makes one very tired, and two, I was actually having a bout of the flu, thinking it was Wegs. I feel fantastic today and am cough-free, taking the meds in a different order which is helping a lot. My fantastic pulmonolgist was so kind about this, and my rheumy too. I feel better than since August. I sure hope this turns out to be your case, that is, some explanation other than Wegs. Prayers your way.
hellojulie

Hellojulie, Thank you for your post--you have brought up some very good information. I am too on many meds, and taking a look at them with a Dr. would not be a bad idea at all!! I have actually talked to my Primary Care Dr. about possibly not taking some of the meds I take for depression and anxiety. But he just says its probably not a good idea, because of the ups and downs I have dealing with Wegeners.....but I am going to talk to him again. I know that those 3 meds all cause drowsiness. I feel like I take a "cocktail" of pills each day. So when you found out you were actually fighting the flu instead of a flare....what a relief! I had a CXR 3 weeks ago at my Rheumatologist office and it was unchanged, and supposedly negative for any obvious problems. But my coughing and wheezing is getting progressively worse, so maybe I AM fighting the flu, my goodness its everywhere right now!!! I And also, I just came off a flare, and down to 10mgs. of prednisone, but I was on a high dose the last month, and my resistance was way way down....I have an appointment tomorrow with my EENT, to see if I could possibly have a subglottic stenosis of my throat. It causes all the same symptoms. This wegeners disease is a mean, tricky, confusing, crazy thing to have to deal with! I am so happy you are feeling better, and I hope that you do not get the damage as bad as I do, as the treatments (Rituxan) are a lot better than what was available or known to help back when I was diagnosed. Thank you for your prayers, and your information...I appreciate it so much. Ill let you know what I find out!! In the mean time, Blessings and Love to you --- :-)

[hellojulie]

Hi Lilly -- be sure to get the test for flu (nose swabs)-- I never did feel like I had it, but the test showed Type A! I mean, I wasn't down with fevers except twice, briefly. I still had an appetite ( a recent development, and welcome, as I have gone from 156 pounds to 120 in my four and a half months of Wegs) and I was just extraordinarily tired as usual. And the coughing and blowing, that had been going on for two months, with yukky stuff coming up. Now: lungs are mostly clear, and my head is clear, a miracle. I feel like the retuxan is really kicking in this time. I sleep well, also thank goodness, and take Percocet to be more comfortable, and to lessen my foot pain.

Yes, what a strange disease. Do you have neuropathy? My right hand and both feet do not work well anymore; Wegs gave me drop foot and of course I can no longer drive. My husband takes me around, thank goodness he is retired and can do this. I walk mostly with a cane but can walk on my own at home. I am older than you are, 73, and I figure after 70 all bets are off, so indeed life is a gift for me every day! Love and blessings back,
hellojulie

[Lilly]

Hi Lilly -- be sure to get the test for flu (nose swabs)-- I never did feel like I had it, but the test showed Type A! I mean, I wasn't down with fevers except twice, briefly. I still had an appetite ( a recent development, and welcome, as I have gone from 156 pounds to 120 in my four and a half months of Wegs) and I was just extraordinarily tired as usual. And the coughing and blowing, that had been going on for two months, with yukky stuff coming up. Now: lungs are mostly clear, and my head is clear, a miracle. I feel like the retuxan is really kicking in this time. I sleep well, also thank goodness, and take Percocet to be more comfortable, and to lessen my foot pain.

Yes, what a strange disease. Do you have neuropathy? My right hand and both feet do not work well anymore; Wegs gave me drop foot and of course I can no longer drive. My husband takes me around, thank goodness he is retired and can do this. I walk mostly with a cane but can walk on my own at home. I am older than you are, 73, and I figure after 70 all bets are off, so indeed life is a gift for me every day! Love and blessings back,
hellojulie

hellojulie, Its so nice to hear from you this morning. Its interesting about the neuropathy and drop foot. I have a lot of foot (feet) issues. I have always had a bad bunion on my left foot. Since getting wegeners, I had to put the surgery on the back burner for awhile. Then when I had insurance that would cover the bunion surgery, something would come up every single time I scheduled the surgery!! It got to be funny, the first time I broke a toe 2 days before surg, and had to wait for it to heal. The next time I scheduled it, I got a flare. The next time I had to have sinus surg. I could go on for 3 more scheduled surgeries....so now, my bunion is so bad, its going to have to be broken and have plates and screws...so I have put it on the back burner again. And I also have times when I have to wear a thing on my foot when I sleep because my foot will not stay up, and this soft thing called a Posey, keeps my foot up. And I have a strange feeling on my right foot. It feels like there is something around it, like wrapped around it at the arch. I guess its numb. So strange foo things....I still drive, but my Mom comes with me to most appts, so she drives and that's a good thing, because then I can take my pain meds. So nice to learn more about you, and although we are discussing our health issues, its nice to talk to you. You are blessed to have a husband who is there for you. I will let you know what the dr says today about my throat and ears. Have a wonderful day, Blessings and Love,

[hellojulie]

hellojulie, Its so nice to hear from you this morning. Its interesting about the neuropathy and drop foot. I have a lot of foot (feet) issues. I have always had a bad bunion on my left foot. Since getting wegeners, I had to put the surgery on the back burner for awhile. Then when I had insurance that would cover the bunion surgery, something would come up every single time I scheduled the surgery!! It got to be funny, the first time I broke a toe 2 days before surg, and had to wait for it to heal. The next time I scheduled it, I got a flare. The next time I had to have sinus surg. I could go on for 3 more scheduled surgeries....so now, my bunion is so bad, its going to have to be broken and have plates and screws...so I have put it on the back burner again. And I also have times when I have to wear a thing on my foot when I sleep because my foot will not stay up, and this soft thing called a Posey, keeps my foot up. And I have a strange feeling on my right foot. It feels like there is something around it, like wrapped around it at the arch. I guess its numb. So strange foo things....I still drive, but my Mom comes with me to most appts, so she drives and that's a good thing, because then I can take my pain meds. So nice to learn more about you, and although we are discussing our health issues, its nice to talk to you. You are blessed to have a husband who is there for you. I will let you know what the dr says today about my throat and ears. Have a wonderful day, Blessings and Love,

Lilly, it is indeed lovely to be getting to know you! I have been hoping for a correspondence with someone who is about my level of the disease, and you are such a nice person to boot! Actually I must admit everyone does seem nice on this forum.

I am VERY curious about the nose and ears --yes please let me know. My ears and sinusitis were the first symptoms I had -- I just kept getting more and more 'plugged up". I could hear, but it was like everything was far away. I had the most awful time finding an ENT in North Carolina (Asheville) who would take my insurance and a referral -- when I did, he did nothing at all which helped. Of course neither of us knew anything about Wegener's, never heard of it. We were in NC for the birth of our son's FIFTH son! and were there for almost six weeks, while I got to feeling tireder every day, helping out with the four other little boys (eldest is 10). I was so glad to get home to Louisiana!! Exactly one month later after numerous doctor visits, emergency room ( sudden paralysis in feet and hand) and hospitalization, I was diagnosed at last, immediately got the treatments and started the healing.

I am so sorry about that bunion!! I have a very little one -- I had better start watching it. No - it is not a bunion. It is a corn.

Anyway, my ears are worse, though I can still hear. I wonder however if eventually I will go completely deaf.

As to the odd feeling of the band around the foot, oh yes I have that in both feet, very seriously after a night's sleep, and it feels so REAL, like a tight band is really around my heel and ankle and instep. It also feels, often, like I am wearing Booties or big muklucks, when there's nothing on my feet at all. So strange. It's the vasculitis. I'm going to try to teach myself hand sewing with my numb fingers. I sewed something for my little granddaughter the other night; the hem on her nightgown was coming loose. Not easy but I did it, yay.

Best of luck at the doctor's! Blessings and thanks to your mom for taking you places.
hellojulie

[Lilly]

Lilly, it is indeed lovely to be getting to know you! I have been hoping for a correspondence with someone who is about my level of the disease, and you are such a nice person to boot! Actually I must admit everyone does seem nice on this forum.

I am VERY curious about the nose and ears --yes please let me know. My ears and sinusitis were the first symptoms I had -- I just kept getting more and more 'plugged up". I could hear, but it was like everything was far away. I had the most awful time finding an ENT in North Carolina (Asheville) who would take my insurance and a referral -- when I did, he did nothing at all which helped. Of course neither of us knew anything about Wegener's, never heard of it. We were in NC for the birth of our son's FIFTH son! and were there for almost six weeks, while I got to feeling tireder every day, helping out with the four other little boys (eldest is 10). I was so glad to get home to Louisiana!! Exactly one month later after numerous doctor visits, emergency room ( sudden paralysis in feet and hand) and hospitalization, I was diagnosed at last, immediately got the treatments and started the healing.

I am so sorry about that bunion!! I have a very little one -- I had better start watching it. No - it is not a bunion. It is a corn.

Anyway, my ears are worse, though I can still hear. I wonder however if eventually I will go completely deaf.

As to the odd feeling of the band around the foot, oh yes I have that in both feet, very seriously after a night's sleep, and it feels so REAL, like a tight band is really around my heel and ankle and instep. It also feels, often, like I am wearing Booties or big muklucks, when there's nothing on my feet at all. So strange. It's the vasculitis. I'm going to try to teach myself hand sewing with my numb fingers. I sewed something for my little granddaughter the other night; the hem on her nightgown was coming loose. Not easy but I did it, yay.

Best of luck at the doctor's! Blessings and thanks to your mom for taking you places.
hellojulie

Good morning hellojulie, I am enjoying talking with you also, and you are super sweet! Even though our diagnosis dates are very far apart, I feel we can still learn from each other. I agree with you about this forum, others who see what is posted will usually jump in to help if they have any advice....all the members are wonderful! I have made many friends, and since we are all battling the same chronic disease (and sometimes, other illnesses along with the wegeners). I see that you were diagnosed in Aug. 2017...that is a good thing in the aspect of treatment for new patients. I am interested in learning about people, like you, who are diagnosed within the last 5-10 years, if yall will have less body destruction from wegeners. Mainly because of the newer treatments, like Rituxan. So, speaking of "body destruction"..... :-D My appointment with my EENT yesterday was very interesting. He has been my doctor since 2010, and has performed some surgeries on my ears, inserted tubes in both ears, and clean my nose out in the back where I cannot reach. So, needless to say, we have a good patient/doctor relationship. But I noticed the time I saw him before this, he was acting a little flippant about my questions about my ears, and basically I felt he just felt like there was nothing more he can do for me and my ears. So, yesterday I wanted to discuss my ears, and get him to explain exactly what is going on in my ears at this time, and what options I have. He looked in my left ear, and told me there is definitely a tear in the eardrum. (this ear was damaged from a year of ear infections-until diagnosed with wegeners) Then he looked in the right ear, and the tube was just sitting in my ear stuck in earwax! So he took it out. I asked if he could explain some of the symptoms, like the roaring and noises I hear and the fluid I feel and pressure. He explained it was the nerve damage, caused from years of tubes and infections. I began to explain that I realized from the many weg. patients I talk with, these problems seem to be the norm for those who have had it for 20 years or more. It seemed like he just stopped listening. He obviously sees many patients with the same ear problems I have but don't have a disease. So when I told him about my throat, and wheezing and coughing....he said that from his experience, I do not "sound" like I have a narrowing in my throat. I told him the wheezing comes and goes, but I wheeze a lot more in the evenings, and my cat can hear it. I explained that my symptoms are the same as someone who has COPD, or asthma. But my cardiologist has been trying to help my wheezing and etc...but I'm not getting better. And many long term weg pts have this issue....then I realized that each time I mentioned the problems being a possible result of my wegs, he mentally shut down....even smirked a couple times. My Mom rolled her eyes at him when he said "well if your doctor wants a CT scan to see if you have a narrowing, I'll be happy to order one." There was a ring of sarcasm in his tone....Mom did NOT like it. I said my doctor did not want it, I wanted to find out if that's what could be causing my SOB, and nauses, etc. So now he thinks that I am trying to diagnose myself!!!! This post is getting too long, but I realized what was happening, so I just asked if he could clean out my nose, and tell me how it was looking....so he did that. It did not look bad because I have just come off a flare and had lots of steroids. I mentioned to him that I cannot taste or smell anymore, and now I am having ear problems, and I am just keeping up with the issues caused from my disease. I think at that point he understood a little about why I am (in HIS eyes, trying to diagnose myself from talking to others on the computer) but I am actually keeping up with an unstable disease, and trying to stay a step ahead of it to keep me as well as possible. Sooooo, I had a hearing test (results holding with no change since last one a year ago) and he ordered a CTscan to look at my neck/throat. I go see him a week later to discuss CT. To those who didn't fall asleep reading this long post, I want to share a web site that reminds me of how my doctor was acting. Its a website about Degos Disease. degosdisease.com/patient When the site comes up, choose "patients" from the top list. Then from the choices on the left, choose "A letter from a Doctor to those with chronic diseases." From Dr. Rob Lamberts. I'm sure many have read this, but it helps me when a doctor acts like my doctor yesterday. We have always been a good "team", but now that he cant do anything else to fix me, he is just lost. Sorry this is so long, but I cried yesterday because I just felt foolish....so if anyone else has had this experience, check out the "Doctors Letter", it may make you feel better. Blessings and Love.....

[NatriceRomeo]

Hi Lily, I’m sorry you are having these problems-they sound terrible! To me it sounds like the chest pain, SOB and dizziness upon anything physical is hypoxia. I would get a little pulsox (sell them at Walgreens) & start taking measurements when you get these symptoms (of course I would get a baseline first). That also being said I understand you have anxiety. I would not start taking any measurements if you think this will increase your anxiety. It will be a merry go round then


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[im so blessed]

Im so sorry your dr didnt take you seriously. That is very disheartening. I dont take it very well at all when that happens. I read that letter from the dr. He is very humble to admit what he did, i wish my dr could read it, and just acknowledge it...but then im being the proud one in even saying that i guess:sad:

[Helen]

Hi Lily, I am new to this forum. Some of your post were delightful to read because you have a witty side despite the pain. I may be able to provide some input to your current ENT frustrations, which I DO understand... esp. when you mentioned the "tone" from the otolaryngologist. I've have had this much of my life, and learned a lot in the last 2 yrs, that may be beneficial (or not)... doesn't hurt to share.

1. You seem to be on many medications. I learned that your Pharmacist may be your best friend to share your concerns, symptoms and side-effects from the meds. (as the info. are deliberately printed, pgs in teeny-weeny 2 pt. font). I was told Pharmacists have more knowledge than prescribers, which makes sense as it's their expertise. They also seem to be more willing (and friendly) to take the time aside for discussions.
2. If you have high-blood pressure, diabetes, asthma etc. Try get the home self-check tools, so when symptoms arises, you're able to immediately use them (and take a photo) to show your Dr. the next visit and for your own peace of mind to lessen anxiety. Many times anxiety is caused by lack of knowledge and the unknown. Once you're aware & familiar, things feel better right?
3. Do you have sleep apnea?
4. Does your throat worsen when lying down? When does it become irritated?
5. Do you understand the reasoning for the P.E tubes in your ears? How long have they been placed there? (which is also informative). Did your ENT explain?

That's it for now. Take care Lily - Helen

[Alysia]

Sweet Lilly,
Thanks for the update. Reading it made me feel like I am sitting right there with you in the room, rolling my eyes to your mom :blink: and holding myself not to get mad at the dr. :angry: I am glad you didnt give up and got the CT. Good luck with it. Please update us.

I dont think that its wrong if we come to the dr. with info we read on the forum. The friends here have so much experience, much more then our docs have. I tell about the forum to my pulmy and wg dr. The first likes to hear about it. The second not so much but is still curious.
We are not and should not be "dumb" patients who only waits for the dr's "wisdom" :scared: We also have our opinion and a decent dr. needs to listen and to consider it.

Anyway, you are such a kind and pure soul, to be compassionate to the poor docs.

[Lilly]

Sweet Lilly,
Thanks for the update. Reading it made me feel like I am sitting right there with you in the room, rolling my eyes to your mom :blink: and holding myself not to get mad at the dr. :angry: I am glad you didnt give up and got the CT. Good luck with it. Please update us.

I dont think that its wrong if we come to the dr. with info we read on the forum. The friends here have so much experience, much more then our docs have. I tell about the forum to my pulmy and wg dr. The first likes to hear about it. The second not so much but is still curious.
We are not and should not be "dumb" patients who only waits for the dr's "wisdom" :scared: We also have our opinion and a decent dr. needs to listen and to consider it.

Anyway, you are such a kind and pure soul, to be compassionate to the poor docs.

Hi Alysia, Thank you, and all of you other friends, who have responded with information, experience with what I am going through, and support. I am sorry its taken me so long to respond.....I feel like I am trying to dig myself out from under a mountain of paperwork!! I have 3 meds that THANKFULLY I am able to get for no cost. Each med is very expensive and I am very fortunate to be approved, but each has its own set of rules, and each year I re-enroll for each separately....I have to do all the legwork, phone calls, keeping folders for each one so I will not get confused. So I am basically "brain dead" at the moment!!! But, I had to check on my dear friends here.....So, I had the CT of my throat LAST Monday, Thursday the nurse called and told me it was negative...no narrowing. So that's good news. Today I am going back to the EENT for post CT follow up appt, so he can tell me he was correct! (I am praying that I will not go in with that kind of attitude) I feel like he just cannot understand what it is like to have a disease that causes issues with your body that cannot be medically explained, so you have to look at all possibilities. In the mean time, you suffer and are afraid. But today I am praying that I will have a positive attitude when I see him, and let God help me and guide me as me and the doctor discuss my issues. I Love you all, and will be in touch, and let yall know how things went. Blessings to you all.....Love Lilly

[Lilly]

Hi friends, thank you for all your support, information, and just being there for me.....So to follow up on my EENT appointment on Mon. Feb. 5th, where I was wanting to know if I may have tracheal stenosis.....and my doctor was very negative....(yall know the story,,,) So I was very apprehensive about my follow up visit yesterday Mon. Feb. 12. I already knew the CT of my throat was negative, the nurse called me and told me. So I prayed that God would just speak through me and I would not wear my feelings on my shoulder. Well, when he came in, he was his usual smiling pleasant self, and I said, "well, good news that the CT was negative...so I know that is not what is causing my issues". And he said, well...what do you think you will do now? And I told him that "I would just accept it for now, make any changes that cause it to become worse until I can find out what could be causing it. This is just part of the journey...."
But before I left, I asked him to look into my right ear ( not the one with the tear in the eardrum) because for the last 5 days, each morning I would sit up and I felt fluid behind my eardrum. So when he looked, sure enough there was fluid. He put the options in my lap, did I want him to drain it and put a tube in? Or see what it does and come back in 5-6 weeks. I decided to get the fluid out, to reduce the chance of infection. I usually have this done in the office, so I got ready. I always close my eyes, and hold my hands together and hold as still as possible. He talked me through it, as always. This time was a little different when he was suctioning the fluid out....it was too thick to get out the regular way, so he said, "Ok, this is going to be VERY loud, like a strong wind blowing...." And he gently put it in 3 times....and, and each time I felt like the table was falling forward and I was going to slide right off the end!!! LOL. I guess the strong suction made me feel like that!! Crazy!!! So, when he was done, I asked him if he had any idea why the fluid was so thick? And he said, "Well, having wegeners for as long as you have, I imagine its part of the long term damage. But hopefully this tube will give you some better hearing for now. I'm here if you need me. Take care". So, I felt very relieved that he acknowledged my wegeners as an issue with my ears, and he has never done that before. I can hear out of my right ear much better, for now, and for that I am thankful. One day at a time.....Blessings to all of you my friends. I love yall....Lilly