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Old 09-11-2019, 10:58 AM
 
4 posts, read 240 times
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Hello all,

Apologize if this is long... This is a question about looking for pulmonary specialists.

I've been having chest tightness and shortness of breath for several weeks now. I've been to my primary care, Urgent care, and then one trip to ER when it got really bad and I couldn't breathe. The ER thought I was just anxious and to prescribed anxiety meds. I've never had asthma, food or airborne allergies, work a sedentary office job, don't smoke or drink, don't suffer from anxiety attacks, and am relatively healthy. None of the doctors I've seen know what's wrong. I've had CT scans, Chest X-ray, blood work, and lung function test just recently. The CT scans, xray and blood work came back normal. However, the respiratory tech said initial results for PFT don't look good. The tech even teased me that emphysema patients usually have better results.

Since no one knows what's going on they have put me on a cocktail of meds: 2 different anxiety meds, 2 inhalers (one steroid and one albuterol), Zantac (acid reflux), Claritin (allergy). I've taken these for 2 weeks but have not had much relief. The flare ups happen throughout the day, but are worse at night despite taking the medications on time, every day. I don't even get much relief from the inhalers, which leads me to believe it's not asthma related either. Some nights I am clutching at my chest or laying down feeling like I'm breathing through a straw. I can breathe better through my diaphragm but chest breathing is very labored. Haven't really slept in days. After weeks of suffering, it feels like some sort of inflammation. I'm not sure why my PCP didn't send me to a pulmonary doctor sooner...

I was lucky in a sense that I even got the lung function test this week because they were booked for months out. Someone called and cancelled so I was able to be seen. I am trying to be a better patient advocate for myself and get a second opinion. I'm fed up with the waiting and not being able to breathe normally. I'm a few hours drive from some of the best hospitals in the US (Boston), but they all seem to require referral from my PCP and appointments are booked until November. Should I schedule a general appointment with a new physician first, and then have them refer me to see a pulmonary specialist faster?

I have a 2nd follow up with pulmonary 8 days from now to discuss the results. That seems like a long time to wait with breathing issues, but for my own sanity and health, should I continue searching for other pulmonary doctors? I'm worried it'll get so bad during the waiting period that I'll need to be rushed to ER again, just to be sent home again.

Any input is appreciated.
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Old 09-11-2019, 01:53 PM
 
Location: on the wind
7,821 posts, read 3,292,257 times
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Does your insurance require you to get a referral from a PCP before seeing a specialist? Have you checked back with your PCP, explained all this, and insisted on pulmonologist referral? That might play in to whether you see a new PCP first or go back to your current one and request the referral through them.
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Old 09-11-2019, 04:19 PM
 
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Quote:
Originally Posted by Parnassia View Post
Does your insurance require you to get a referral from a PCP before seeing a specialist? Have you checked back with your PCP, explained all this, and insisted on pulmonologist referral? That might play in to whether you see a new PCP first or go back to your current one and request the referral through them.
I have a PPO plan so technically I don't need a PCP referral. But all the places I've called tell me I need a referral or I can wait 2-3 months to book an appointment. The only one that didn't require a referral was Brigham Women's Hospital in Boston. It would be considered self referral, but they cannot tell me if they have open appointments until I am registered and I get all my medical information to them. I will be seeing my PCP on Friday and pulmonary for follow up next Thursday. I'll ask about about pushing for more testing and referrals. Most people I've talked to tell me another 8 days isn't unreasonable to wait.
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Old 09-11-2019, 05:55 PM
 
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You might also need other specialists. If it is inflammation, it might be something like silent reflux, which would be treated by an ENT. Silent reflux often causes shortness of breath and Zantac might not work fo you. I had silent reflux that morphed into non-silent reflux and was having some serious breathing issues starting about a year ago. I think it was due to a variety of factors, partially that the albuterol actually worsens reflux. If you have silent reflux, then using albuterol too much might actually give you MORE shortness of breath since silent reflux can cause shortness of breath. If I need to use it, I try to keep it to once a day maximum.
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Old 09-11-2019, 06:09 PM
 
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I have had shortness of breath and no stamina.Do very little work and have to sit down and rest,doctor says hypertension,blood pressure,been fighting it since last November.
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Old Yesterday, 06:38 PM
 
4 posts, read 240 times
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Quote:
Originally Posted by RamenAddict View Post
You might also need other specialists. If it is inflammation, it might be something like silent reflux, which would be treated by an ENT. Silent reflux often causes shortness of breath and Zantac might not work fo you. I had silent reflux that morphed into non-silent reflux and was having some serious breathing issues starting about a year ago. I think it was due to a variety of factors, partially that the albuterol actually worsens reflux. If you have silent reflux, then using albuterol too much might actually give you MORE shortness of breath since silent reflux can cause shortness of breath. If I need to use it, I try to keep it to once a day maximum.
How did they test you for silent reflux? The inhalers rarely give me relief.
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Old Yesterday, 07:35 PM
 
Location: San Antonio, TX
11,224 posts, read 20,866,885 times
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Singulair is good for shortness of breath. Also, Claritin doesn't work for everyone, so if it doesn't help, consider trying zyrtec or Allegra.

Also, have you been checked for anemia? When it gets low enough, it can cause shortness of breath and chest pain or rapid heartbeat.
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Old Yesterday, 07:56 PM
 
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Originally Posted by evangalg View Post
How did they test you for silent reflux? The inhalers rarely give me relief.
I did not get tested. I ended up with really obvious reflux, started on Protonix, and my symptoms improved after a few months. I was having some allergy issues too and the Flovent helped with that.
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Old Yesterday, 08:12 PM
 
4 posts, read 240 times
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Quote:
Originally Posted by Hedgehog_Mom View Post
Singulair is good for shortness of breath. Also, Claritin doesn't work for everyone, so if it doesn't help, consider trying zyrtec or Allegra.

Also, have you been checked for anemia? When it gets low enough, it can cause shortness of breath and chest pain or rapid heartbeat.
They took blood samples and said everything looked normal. I would think anemia would be brought up if the blood work was abnormal in any way?
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Old Yesterday, 08:20 PM
 
2,881 posts, read 4,403,106 times
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Any chance there could be mold somewhere in your home or office?


Years ago I knew a family whose daughter suddenly had symptoms of asthma. Turned out there was mold in their home. Once the mold was remediated than the daughter's asthma symptoms disappeared.


Just a thought.
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