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Old 04-29-2013, 04:28 AM   #1
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Is this asthma?

Hi all,

I've been having difficulty breathing pretty much consistently since 1/28 when I had a nasty chest cold or flu. The flu lasted about a week, and I was left with a lingering cough and the shortness of breath which the doctors treated with mucinex. But at that time, the issue was more of an annoyance than a serious issue as I could still walk around and work.

In mid February, I saw the doctor again to try to get rid of the remainder of the symptoms, and he thought it might be adult onset asthma, so he referred me to a pulmonologist, who put me on a steroid inhaler. I also had a second minor cold around this time. Two days later, my symptoms were drastically worse, and have been 'stuck' that way until now.

I've seen the pulmonologist several times, the cardiologist, and I've been hospitalized so they could run tests, an echo, blood work, arterial blood gas, and a CT scan, all normal. He thinks it's still an asthma diagnosis. I haven't had the spirometry tests yet, hopefully that will happen this week.

Unfortunately, it doesn't seem to respond to any medications. Not prednisone, inhaled steroids, albuterol, etc. I have severe GERD and a hiatal hernia and have been on PPIs for over a decade, the highest dose you can be on as well as additional zantac at night. I avoid all the foods I should avoid and... well, my stomach feels okay but if there's silent aspiration there's not much more I can do.

My sinuses are going nuts. Even with the neti pot, fluticisone, azelastine and claritin, my nose is still running sometimes, though it is much better.

I guess my question here is, I haven't felt like I've been able to breath since 1/28. And for a couple months now, I haven't been able to walk more than a few minutes before my chest starts feeling super tight, and I start coughing this dry cough really bad. Does anyone else have asthma like this? Especially asthma that doesn't respond to any medications?

 
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Old 04-29-2013, 07:45 AM   #2
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Re: Is this asthma?

Have they done a PFT pulmonary function test on you yet? This tells you how your lung function! Also when you got sick did you get pneumonia? If so pneumonia can take up to a year to get better depending on how bad you have it. Sorry you are still feeling like this.

 
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Old 04-29-2013, 08:22 AM   #3
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Re: Is this asthma?

Thanks for responding. They never checked for pneumonia when I had the first symptoms on 1/28. The day before I felt mostly fine, but right when I first got sick, I had the awful shortness of breath. It was so severe I had to come home and I called the nurse. Due to the flu endemic, they didn't actually want me to come in to the doctors office. I never coughed up anything other than white mucus. I bought a blood oxygen meter at the time thinking that if it dropped below a certain number I'd go in to the ER, but it's always in the 96-98% range.

I've been checked for it at least once since and there's no signs I guess. They've done lots of blood cultures, the chest xray, and the high res CT scan and no signs of any issues. I also bought a home PEF/FEV1 meter. I don't have a good frame of reference for it since I've never felt good since owning it, so I don't know what a 'good' number is for me. I usually blow 580-620 PEF and 4.8-5.1 FEV1, and I'm 5'11, 34 years old, and overweight. The PEF numbers seem relatively normal. I haven't found a good source for FEV1 numbers online, I bet they look normal too. What I blow doesn't seem to change much based on how I feel either.

I haven't had the REAL pulmonary function test yet. It was scheduled for 5/30 like back in march, but they were finally able to move it up for me. 5/1 now. So hopefully that will help me get some answers.

If I'm blowing normal PEFs and not responding to asthma medicines, I'm not sure why the doctors are so sure it's asthma. I've read every wiki page on lung diseases and I sort of can't see anything that fits either. I'm either crazy and it's all in my head, or maybe it's something like Vocal Chord Dysfunction. My throat really does hurt and my voice is really nearly gone and rattly, but that started when I went on the inhaled steroids. Of course, that is also when all my problems got worse...

They have me on 10 different medications right now and I just feel worse. Part of me just wants to cut all that out and just try to go back to the way I was. I know that's probably a coincidence but, it's just all so weird :P

 
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Old 04-29-2013, 08:30 AM   #4
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Re: Is this asthma?

do you use a spacer with your inhalers? This happened to me when they started me on my new steroid inhaler by voice got all raspy and my throat hurt. But about 1-2 weeks after doing my inhaler with the spacer the throat got a lot better and my voice went back to normal!! Still now though if I breath it in from the spacer to fast my voice will start to go raspy again and my throat will start to hurt again.. So if you aren't using a spacer I would ask your Dr. about getting one.. Also if what you had earlier this year was an asthma attack and not a cold or a cold along with an asthma attack they can take weeks sometimes months before you start to feel normal again. However this next test that they will be doing will be able to tell you what is going on with your lungs. Before I got on my meds I was only using 40% of my lung functions but now I am up to 88% I would try to wait and see what this next test shows and go from them. I know easier said then done!!! I hope they can figure out what is going on and make you feel better!!





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Thanks for responding. They never checked for pneumonia when I had the first symptoms on 1/28. The day before I felt mostly fine, but right when I first got sick, I had the awful shortness of breath. It was so severe I had to come home and I called the nurse. Due to the flu endemic, they didn't actually want me to come in to the doctors office. I never coughed up anything other than white mucus. I bought a blood oxygen meter at the time thinking that if it dropped below a certain number I'd go in to the ER, but it's always in the 96-98% range.

I've been checked for it at least once since and there's no signs I guess. They've done lots of blood cultures, the chest xray, and the high res CT scan and no signs of any issues. I also bought a home PEF/FEV1 meter. I don't have a good frame of reference for it since I've never felt good since owning it, so I don't know what a 'good' number is for me. I usually blow 580-620 PEF and 4.8-5.1 FEV1, and I'm 5'11, 34 years old, and overweight. The PEF numbers seem relatively normal. I haven't found a good source for FEV1 numbers online, I bet they look normal too. What I blow doesn't seem to change much based on how I feel either.

I haven't had the REAL pulmonary function test yet. It was scheduled for 5/30 like back in march, but they were finally able to move it up for me. 5/1 now. So hopefully that will help me get some answers.

If I'm blowing normal PEFs and not responding to asthma medicines, I'm not sure why the doctors are so sure it's asthma. I've read every wiki page on lung diseases and I sort of can't see anything that fits either. I'm either crazy and it's all in my head, or maybe it's something like Vocal Chord Dysfunction. My throat really does hurt and my voice is really nearly gone and rattly, but that started when I went on the inhaled steroids. Of course, that is also when all my problems got worse...

They have me on 10 different medications right now and I just feel worse. Part of me just wants to cut all that out and just try to go back to the way I was. I know that's probably a coincidence but, it's just all so weird :P

 
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Old 04-29-2013, 09:00 AM   #5
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Re: Is this asthma?

No I don't have a spacer yet, but the doctor mentioned getting me one on Friday. I wasn't good at the inhaler at first. I hit my tongue 50% of the time. I read somewhere to aim up higher now so now it doesn't hit my tongue, but sometimes it feels like it hits the back of my throat. It just feels so touchy, I think a spacer will help.

I have a problem breathing WHILE pressing the inhaler too I think. I feel like I stop breathing suddenly everytime it sprays in my mouth. I can't seem to prevent that from happening. I have the timing down, breathing in right before I hit the 'button' but there's always a slight pause in my breath when the mist hits.

He's got me doing 4 puffs of Flovent HFA now twice a day, so 880 mcg twice a day for 1760 mcg total inhaled. They don't have me on any sort of long lasting bronchodialators yet. Albuterol messes with my heart rate and makes me feel pretty crummy, and I have some benign arrythmias so maybe that's why they won't go there?

Interesting that you were breathing too fast though, thanks for the tip! I'll try breathing a little more calmly and see if that helps. Do you rinse with water or do you use mouthwash?

I guess I don't mind waiting months to feel better, but it's been nearly two months already since beginning asthma treatment, and I don't feel any better. I felt like I was suffocating all night Friday night and it was awful. I have good days and bad days though, and that was just a particularly rough night

But... I'd just like some sign that I'm going to feel better at this point, though it's reassuring to know others kinda take a while to feel better too. Is it a gradual feeling better, or is it a few months of suck with sudden improvement towards the end?

 
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Old 04-29-2013, 07:19 PM   #6
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Re: Is this asthma?

You've received good advice from some of the other posters. I'll address the acid reflux part.

I have both asthma and acid reflux issues and frequently it is impossible to tell the difference between the two because I get a chronic cough and difficulty breathing with both.

I was on high dose PPI's twice a day for many years. Then they pretty much stopped working well. Even on Advair 500, Singulair and Prevacid 40 mg twice a day (or other high dose PPI's x 2), and Gaviscon or Zantac, I still had severe 'asthma' problems. My PFT's came back normal every time, but it takes me 4-5 months to get an appointment with my Pulmonologist and I've never seen him when I'm flaring the worst. The tests that I found most useful to figure out when my reflux is flaring bad are: modified barium swallow/esophagram (actually showed acid coming up to my lungs), 24 hr pH testing (normal kind), 24 hr pH testing with ResTech upper probe which measures gaseous acid coming up past my throat, and manometry. Some of those I had repeatedly over several years and they showed things getting worse despite multiple heavy hitting treatments.

In order to get (and maintain) control of my symptoms, I actually have multiple specialists. I see an ENT (who treats my allergies, asthma and monitors my acid related throat problems), a Gastroenterologist (for the reflux), and a Pulmonologist (who monitors the breathing and reviews all of the other doctor's tests, discusses my history and provides me with a written treatment/action plan).
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Old 04-29-2013, 08:18 PM   #7
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Re: Is this asthma?

Thanks for the info. I'm on 40mg of omeprazole 2x a day though it can be nexium or others depending on insurance or what have you. I had a barium and an endoscopy last year that came back okay apart from the hiatal hernia. But actually I've never had the ph tests or anything. I'm surprised the pulmonologist hasn't recommended that I see the GI again, but maybe I'll take it upon myself.

Of course, all of that sounds scary because what else can you do? Surgery? I've always been told that repairing the hernia itself is only a temporary option. Gastric bypass has been suggested and I could use the weight loss but that seems so extreme.

I also haven't seen an ENT which is also surprising considering the severity of my allergy issues. Again, I was waiting for the guy to sort of make the referrals for me but... he's sort of been handling everything himself.

 
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Old 04-29-2013, 08:49 PM   #8
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Re: Is this asthma?

My acid reflux related asthma problems became so bad in 2008 that it was literally life threatening. (I had unusually severe problems.) I ended up having surgery for it. Since then, I've gone from about 4 yearly sinus infections lasting about 2 months each to having one in 5 years. Evidently, the acid had been making its way up into my sinuses. My PND also significantly improved after the surgery, again because of the acid aggrevation. I also have severe allergies, confirmed through testing, so I hadn't made the connection. My ENT has been a great member of my team.
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Old 04-30-2013, 04:53 AM   #9
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Re: Is this asthma?

Wow, that's very interesting. I'm very curious to know what surgery you actually had?

I've had severe GERD my entire life because of the congenital hiatal hernia. I've needed to be on the PPIs for like 15 years so I wouldn't at all be surprised if my condition could be similar.

My concern used to be the once a month where I would inhale my own vomit while sleeping and wake up choking on it. I figured that would eventually kill me or lead to fibrosis or something. I spend most nights sleeping upright which is murder on my back. Surgery looks more and more viable every year.

I just don't know which surgery

The sinuses are even more interesting. I know I have allergies. They've been consistently getting worse over the years, and they're clearly not under control with all the medications right now either.

I'm actually terrified that the PFT is going to come back normal. I feel like they're going to immediately dismiss me, think that what I'm going through is less serious than it really is, or blame it on anxiety or something.

Your PFTs came back normal yet they continued treating you? Were you actually symptom free during the test? Do you have asthma that's aggravated by the gerd? Are you still on any maintenance medications?

 
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Old 04-30-2013, 07:02 PM   #10
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Re: Is this asthma?

I actually have slept on a 5/6 inch incline for years to help with nighttime symptoms.

Surgery is an extreme option, but my symptoms were so severe that it was a good choice for me. I had a laproscopic Nissen Fundoplication. They made 6 small incisions (no stitches needed) and used the cameras and tubes to do the manipulations. The surgery involved taking the top of the stomach (fundus) wrap it around the lower part of the esophagus and stitch it to itself to keep it in place. I had a sliding hernia that was fixed with this procedure. In fact, this is the surgery often done to 'fix' hernias. This surgery is a good consideration if your lower esophageal sphincter isn't closing correctly. With the stomach wrapped around the esophagus, every time the stomach contracts, it contracts around the esophagus and helps keep the acid from coming up as much. It isn't a 'fix' for acid reflux, but it can help significantly.

Based upon my multiple tests over a period of several years, my acid reflux has become extremely severe. In fact 2 of my specialists said the results were the worst they had ever seen. Ironically, I've been fortunate enough not to have esophageal damage.

It takes me about 4-5 months to get appointments with my Pulmonologist and even after 5 years, I still have yet to see him when my symptoms are flaring bad. I've always wondered how my PFT's would look during those times. Last year, during a check-up, my Pulmonologist told me he wasn't actually sure he was going to be able to get me through things when he first met me. He indicated that if I hadn't been as aggressive in seeking treatment as I was that I may not have survived. One one of my early post-surgery follow-ups with him, he said he had just come from the hospital bedside of a patient who was less severe than I had been. I'm glad he didn't say any of that to me before the surgery. I know it is not common, but I had no idea how badly the acid could bother the lungs and throat.

The asthma and reflux seem to be like the chicken and egg. I have both asthma and reflux. Both give me primary symptoms of a chronic cough. At times when I have an asthma flare, like with a winter inversion (polluted cold air), I start coughing a lot which squeezes my stomach more and results in more acid coming up... which in turn irritates the lungs triggering more asthma symptoms. Other times, I can have acid coming up and irritating my throat which causes chronic coughing... triggering the cycle as well.

I'm on Dexilant 60 mg. daily. With my gaseous acid issues, going completely off of the PPI's was never really an option for me. (Most people who have surgery are able to come off of them though.) I'm also on Dulera for the asthma. I was on Advair for many years though. I also have shots of Xolair monthly which helps with the asthma too. For the allergies, I'm 5 1/2 years into immunotherapy. I went from 4 daily allergy meds to none over the last couple years.

During my last "flare", I added Albuterol in the puffer and nebulizer, Singulair (asthma), Carafate (acid reflux) or Zantac (acid reflux), Tessalon Perle (cough), Phenegren DM (cough).

I've had check-up visits with both my Pulmonologist and ENT/Allergist this month. My new PFT's are normal despite some issues I had over the winter. Both of the specialists agree that I need to continue to treat both the acid reflux and asthma and that my PFT's aren't a true indication of the severity of my problems. They have heard my lungs when I've been 'wheezy/tight' and know my history so they base a lot on that, testing, and what has and hasn't worked for me in treatments.

I think that answered your questions. Please ask if it didn't.
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Old 05-01-2013, 01:23 PM   #11
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Re: Is this asthma?

Thanks for the details MountainReader, a lot to take in there. I had the PFT test today. It was perfectly normal. In fact, my numbers were 110%. They didn't do a methacholine challenge or anything today. I was really worried that the doctor would immediately dismiss me after that but thankfully that didn't happen. The next step is the methacholine challenge test just to see if there really is any asthma or not. And if that doesn't show anything, a pulmonary cardio stress test after that to see if there's anything heart related they've been missing. I also have some heart testing.

But he hasn't ordered any GI work. I guess if I wanted to pursue that, I'd have to take it upon myself. I need to think about that. I'm kind of annoyed that all these tests aren't until 5/29 now. If it is something like cardiac asthma, it seems like waiting another month is insane.

The doctor doesn't really seem to know whether or not this is a lung thing or a heart thing. I think he's still leaning towards asthma as it seems to be periodical in nature and gets worse with viruses, cold weather, etc. But he doesn't like that it doesn't respond at all to any meds.

You're probably right about being aggressive about the treatment. I may call the GI doc just to see if there's anything he wants to do. But I'm hesitant because Im having pretty much zero GI symptoms right now. I've been super good on my restricted diet, no soda or anything because I've been trying to see if it'd improve the lungs.

I'm probably still to overweight for the hernia surgery, though I haven't heard of one quite like the one you're describing. They said I can have the lap band installed or something, but that's a serious life style change and I'm not sure about the long term effects of that. Given my current situation, it doesn't seem so bad though!

 
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Old 05-06-2013, 04:28 AM   #12
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Re: Is this asthma?

Well, I took it upon myself to see my GI doc. He didn't seem wonderfully pleased to see me without a referral from the pulmo but I did have a lot of questions for him. Anyway, he's willing to do the pH testing but wants to wait to see how my weight loss progresses as I've been doing well there. The pH testing is only valuable as far as determining if surgery is necessary and surgery is a big step only if dieting doesn't improve the gerd.

I think I have actually been improving on the 880 mcg of Flovent. It's been over a week since my last bad flare, but my lungs are a lot less sensitive and I can walk a little further now without feeling that chest squeezing sensation. I don't think I've been coughing much at all.

BUT... I had those normal PFT tests. Beyond normal, 110% capacity. And I still don't feel great. I just feel better. I still notice my lungs, I still can't walk around a store or up the stairs without getting shortness of breath, though maybe around the house now.

Is it possible to feel like crap and have a normal PFT test result? I guess I just don't understand that.

 
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Old 05-06-2013, 06:51 PM   #13
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Re: Is this asthma?

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Is it possible to feel like crap and have a normal PFT test result? I guess I just don't understand that.
Yup. I've been there for years. Of course, I've never had my PFT testing done when I'm in the middle of a flare because it takes so long to get an appointment with my Pulmonologist. That is why your history, treatment from other doctors, logging your triggers and daily peak flows at home, etc... are all part of the discussions you should be having with your Pulmonologist. When I first started visiting my Pulmonologist 5 years ago, my PFT's were fairly normal (other testing not so normal), but my asthma was so bad that that he later told me he wasn't sure he was going to be able to pull me through at the time. Very confusing. I do see my numbers increase in my PFT's after I use the inhaler so they do know that treatments are making a difference when I use them.

The best advice I can give is to continue to be your own advocate and fight for yourself. My Pulmonologist actually complements me on that every time and once told me if I hadn't been so persistent the asthma could have literally gotten the better of me at one point.
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Old 06-10-2013, 04:44 AM   #14
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Re: Is this asthma?

Just an update. I've had another set of CT scans, chest an abdominal. I've had the echo stress test if I hadn't already mentioned. I'm just getting a battery of tests because they've all been normal. I have seen an ENT at this point. He shoved a little tube up my nose and down my throat to look at my voice box and that's all good. I've seen the allergy specialist and I have no allergies (a big surprise) but have something called non-allergic rhinitis so I stay on all the same allergy meds which do seem to treat my nasal symptoms somewhat.

I've come off all of the asthma medicines as they seem to do more harm than good. In particular, the inhaled steroids seem to cause high blood pressure and a lot of pain in my throat and for me to loose my voice. I feel a lot peppier off of them.

My pulmo is about ready to write me off as a basket case I think and I don't blame him because nothing makes sense. How can I feel so absolutely miserable and not have one negative test?

Anyway, the only thing we've noticed new is this little area under my sternum where if you press slightly, I have excruciating pain. I don't know if it's my hernia or stomach or muscles or xiphoid process or what. The CT scan didn't show it so he's referred me to a surgeon who specializes in that region, and also specializes in hernia/stomach bypass surgeries I guess.

My stomach *has* been a wreck lately, but not heartburn. It feels like the lower stomach, and it's just more pain than anything else. I just don't feel heartburn.

Anyway, my lung function test numbers continue to be absolutely normal even when tested in the middle of a mild flare up, though I've never been tested in a moderate or severe flare up I guess. If my stomach was bothering my lungs, wouldn't there have to be some reduction on the PFT numbers? Or is it possible that what I'm feeling is just a sensation caused by irritation or nerve pain?

The other option is the heart, and the only test left there is the dreaded cath lab to check for blockages. I don't think any doctor is going to insist on doing it, and they're probably going to make me decide if I want to do it or not. Ugh.

 
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Old 06-10-2013, 08:18 PM   #15
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Re: Is this asthma?

As I indicated before, I've had extremely severe problems with the asthma and 'normal' PFT's at times. My Pulmonologist does an extremely thorough health history every time I visit. He probably spends 20-30 minutes asking me detailed questions about my symptoms, what I tried, what helped or didn't, etc.... He bases as much of his treatments on this as much as he does the physical tests. Like I said before, it is hard to see him when I'm feeling bad.

Have you had a barium swallow or esophagram yet? Those may be very helpful. After my first visit, my Pulmonologist sent me for a Modified Barium Swallow and Esophagram. They are done in the same visit. Basically they (lab tech/radiologist and speech therapist) have you eat/drink various consistencies of barium and watch it on a video x-ray. With the esophagram, they watch the chewing and swallowing process and they can see if anything is coming back up to irritate the lungs. With the Barium Swallow, they watch you sitting, lying down, and on a tilt lying down to see what happens with what you've swallowed. They can see your hernia. They can also see if you have food/acid coming up to the lungs. It took years before it was recommended, but it was one of the most 'telling' tests when I finally had it. It confirmed what I'd struggled to get fully diagnosed.

In your case, I don't fully agree with your doctor that the pH testing is only good for determining if you need surgery. That is one use. It also helps confirm if you actually do have acid coming up as part of your problem in the first place. A Manometry also measures the strength of your LES to tell if you have a problem there. For me, I was able to see through the pH tests that I had that my reflux was getting much worse over the course of several years.
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