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What to do?

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Old 06-20-2012, 04:35 AM   #1
Join Date: Feb 2003
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nannoo HB User
What to do?

Hi all. Would appreciate some help. My husband suffers from hypogammaglobulanemia, which means he has a compromised immune system. He takes Prednisone daily for polyarthritis, which he has done for years. He also suffers from reflux for which he takes Nexium. In March he developed a chronic cough which often produces a lot of phlegm, and sometimes causes him to vomit. He had a chest x-ray which was clear. The cough has continued, accompanied by on-off eye infections, sensitivity to light and bouts of extreme exhaustion. Also, his sense of smell and his hearing seem to have deteriorated. He often sweats at night, and sleeps fitfully. Does anyone recognise this group of symptoms? He has an appointment with a general doctor next week, and I will go with him. Our doctor is good, but very conservative. What tests should my husband insist on having done, and can anyone suggest anything else we can do? Many many thanks.

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Old 06-20-2012, 08:39 AM   #2
Join Date: Jun 2012
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Re: What to do?

I feel your pain. I have experienced something similar – I describe it as a chronic cough with gagging. Just a brief rundown of my medications first: I take over the counter Prilosec (Omeprazole) once in the morning for acid reflux and it is well under control, I use a nose spray (Fluticasone) every morning to keep sinus infections at bay, and I take Fenofibrate before bed for high triglycerides.

Starting May 1st I started coughing. The cough was productive and it kept me up all night such that I could not sleep. Even high doses of Codeine could not knock me out sufficiently. I also felt dizzy and slightly nauseous at times. I never had a fever but I did have water in one of my ears. After 2 weeks of this I was exhausted. By the second week my cough stopped being productive, I started coughing less (or I just learned to control it), but I started having coughing fits that were very long and violent. So violent in fact I tore or aggravated the connecting tissue between my lungs and my rib cage (very painful). After these coughing fits I would be sweating profusely and I would be exhausted.

About 4 or 5 days after these coughing fits started my throat started to close off during the fits. I would cough and cough and cough and at the end I would be sitting or standing there desperately trying to get air into my lungs. I would sometimes go 2 minutes without being able to breathe. Eventually I could start gasping or gulping air into my lungs and then my throat would relax enough that I could breathe. After these fits I found it very hard to talk and I would burp a lot (probably due to the gulping).

After another 2 or 3 days another element was added to the coughing fits - I would gag. Right in the middle of a cough I would just gag. I have not had vomit come up but I have had some spittle/mucus. Usually I just dry heave. The first time my wife witnessed one of these fits in their full glory she got very concerned. They are very violent and the lack of breathing is scary.

I have, to date, learned to suppress the cough for the most part but every once and a while it will sneak up on me and I get the full treatment. It seems like these fits happen more frequently in the morning but I have had them at all times of the day and night. I have been awoken from a sound sleep to the coughing/gagging fit. I still have moments of dizziness and lightheadedness and I find my level of energy is low. I get tired very quickly. Throughout this whole thing I have only had a fever for one night (102F).

I have had the following tests or procedures:
1. Swabbed for Whooping Cough – came back negative
2. Chest x-ray (twice) - both times showed nothing.
3. Pulmonary Function Test (May 30th – day 30) - this is a test for asthma. They have you breathe hard into a tube a few times to determine your current lung capacity then they make you inhale some concoction (probably steroid based), wait 15 to 20 minutes, then they retest you. Un-medicated I was around 99% of normal. After the meds I went to 105%, it was an improvement but not enough. If it were asthma the improvement would have been significantly higher. So no asthma.
4. CT Scan of the Chest (June 1 – day 32) - this also showed nothing of concern. Some little spots showed up and they wanted me to be tested again in one year but nothing that would explain the chronic coughing fits.
5. Endoscopy (June 7 – day 38) - this was the first "test" that actually gave me hope. The doctor expected to see signs of acid reflux but found none. I did have a small hiatal hernia probably caused by the violent coughing fits but nothing to be too concerned with. The most interesting find was a set of ringed esophagus marks as well as some longitudinal marks around the middle third of my esophagus. The doctor took biopsies which 11 days later, June 18 (day 49), ended up coming back benign. The doctor said the marks were consistent with some kind of allergic reaction and that gave me hope, though I have never had an allergy to anything in my life. It gave me hope because that would be treatable. The doctor recommended I followed a strict anti-reflux regimen and if the fits continued he said I should see an Ear, Nose, and Throat specialist for a formal evaluation and formal allergy testing. He also recommended considering a Bravo 48hr pH test to test if reflux is the source of the chronic cough and gagging fits (I have not scheduled this yet).
6. Today, June 20 (day 51), I am going to see an Ear, Nose, and Throat specialist because my fits continue.

I will post more on this once I know more. It sounds crazy but I am hopeful they find that I am allergic to something. Then I can at least have some control. I have seen a couple threads on the boards that were similar but to my knowledge no one has posted anything about a solution. I know my post falls under that same category but I am hopeful that sharing will help you and others with similar symptoms.

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Old 06-20-2012, 07:29 PM   #3
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Re: What to do?

I have CVID and have developed a lung disease from it. My granulomas never show up on Xrays, only CT's. Maybe you could see if your doc would go for it? Good luck

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