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Mysterious shortness of breath: What has helped you?
Lung Health | Last Active: Oct 23 10:20am | Replies (3405)Comment receiving replies
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.
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@debki I feel badly that I don't have any good advice for you and you don't seem to be close to finding a reason for your flare ups despite visiting numerous doctors. I think you are wise to see a neurologist if you think your flare ups had to do with your phrenic nerve. It's my understanding the phrenic nerves can heal themselves within 2 years of being injured. You can have some nerve conduction tests done to see if yours are working or not. In all the doctors you have been to, did you see a pulmonologist? Has there been any evidence on your chest x-rays that you have a raised right or left lung, which would indicate a paralyzed diaphragm. If you think you might have a paralyzed diaphragm, you need to have a sniff test done...which a pulmonologist or thoracic surgeon could order for you. As you did, I went to the ER when I thought I was having a heart attack. My symptoms were shortness of breath after climbing a flight of stairs, extreme fatigue, feeling faint and having chest pains. They took me seriously and did a bunch of tests that ruled out a heart attack or stroke but admitted me to the hospital for more tests. Fortunately for me, someone picked up the fact on my chest X-ray that my left lung was elevated. They called in a thoracic surgeon who ordered more tests that led to my diagnosis of a left paralyzed diaphragm. Since it is such a rare condition, I feel really lucky that the doctors were able to diagnosis it within a week and know a lot of this had to do with my going to the ER of a hospital at a major medical center affiliated with a university. If I had medical issues that no one could figure out, I would find a functional medicine doctor who specialized in looking for root causes of medical problems and addressing them. You could find one by doing a google search on functional medicine doctors near (wherever you live) or finding the organization of functional medicine practitioners and doing a search on their site by location. One of the things you mentioned that intrigued me that a functional medicine person would pick up right away is a possible correlation between the onset of your symptoms and cleaning -- they look for toxins when they are looking for root causes of problems. I hope you find some answers and relief soon! Best wishes!