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Mysterious shortness of breath: What has helped you?

Lung Health | Last Active: 1 day ago | Replies (3425)

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@nla4625

@debkl Do you have a paralyzed diaphragm or was it something you were investigating that might have been causing symptoms you were experiencing? I'm not surprised your PCP hadn't heard of the sniff test. Did you have one to determine if you had a paralyzed diaphragm? There is an interesting discussion going on now in the facebook group with people who have paralyzed diaphragms. Most of us had x-rays dating back years or in my case decades indicating we had a raised lung but didn't display any symptoms of a paralyzed diaphragm, such as shortness of breath, lack of stamina, or extreme fatigue, until years later. An interesting explanation that makes sense but I have no idea if is true is that we didn't experience symptoms until our diaphragms became so atrophied from lack of use that our organs moved up into our chest cavities and compressed our lungs so that we couldn't breath normally. With my left paralyzed diaphragm, it's my stomach that had moved up; and for people with a right paralyzed diaphragm it is the liver that moves up and causes the problem. Interesting thought for the day. If you have a paralyzed diaphragm, I hope you have found a doctor who knows about it and can help you.

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Replies to "@debkl Do you have a paralyzed diaphragm or was it something you were investigating that might..."

Hi, Thanks for your reply. Your experience is something I'm going to bring up with a new neurologist on 11/8.

I had what I'll call an episode that compelled me to go to the ER. I wasn't sure if it was a heart attack but after getting all the brochures from local hospitals about women's MIs being different from mens', I went. MI was ruled out. Symptoms were a feeling of rigidity at the diaphragm level, mid back, biceps and quad weakness, sweating (outside @ 3 degrees), feeling like I couldn't hold my self up, and some SOB. 2 more ER visits and then an overnight stay with cardiac cause very much ruled out, I went home, wiped out, weak, but also with gastroparesis and slight feeling that food was slow entering stomach. Everything flared again when I bent down to pick up an empty suitcase and put it away. At the 3rd ER visit, which was due to all the above but great difficulty getting a breath IN, the ER doc consulted with a neurologist who said he had no idea. Followup with a GI doc and then PCP focused on what they started calling GERD. With another flare, I went to Urgent Care and that doc said it was anxiety and GERD. Due to a scheduling error, the upper endo recommended by the GI didn't get done, COVID hit and I was unable to get in to see anyone, but started feeling better.

Everything flared again mid 2020 when I went on a cleaning spree and then I was able to correlate the first flare to a project I had at work 2 days. I have had absolutely no pain, which is what has thrown everyone off. I just saw a freshly minted physiatrist and I could tell she was just making things up. She sent me for PT for chronic thoracic back pain!

So having worked a long time in radiology and healthcare, I started reading up on A&P and could only come up with a diaphragm issue, either alone or caused by an injury to any of the areas that the phrenic nerve passes through from the work I was doing. At this point, I've seen 7 specialists, a physiatrist who said I should learn to meditate, another who said it's asthma and don't bother with phrenic nerve testing, a cardiologist who said try not to die before getting a stress test, a Sports and Spine Med guy who immediately said he had no idea, a 2nd GI who said please find someone to look at your spine, a DO who did a diaphragm release manipulation which flared everything up, and the clueless physiatrist who sent me for lumbar spine x-rays and PT for deconditioning. I'm going to see a neurologist on the 8th. The 2nd GI didn't want to waste time and $ on an endo but did send me for upper ab ultrasound.

I saw another comment here that someone's phrenic nerve issue cleared on its own after 2 years. I'm hoping that is what has happened to me but I haven't done anything to flare it up, so don't know.