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Mysterious shortness of breath: What has helped you?

Lung Health | Last Active: Oct 23 10:20am | Replies (3405)

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@nla4625

@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!

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Replies to "@debki I feel badly that I don't have any good advice for you and you don't..."

Thanks again for your reply.

I did see a pulmonologist, though my post above wasn't very clear. He was the one who told me to forget about phrenic nerves, don't do testing because it's not accurate and not pleasant. He did not want to hear about all the other symptoms, such as the chest and back muscle weakness. He said to me "Once you get the thought out of your head that there is something else wrong, you will feel better. We're all getting older." My PFTs were worse than expected but it was done when I was having diaphragm spasms (or whatever it is) so he thinks it's all asthma. The pulmonologist took care of my father and was great, which is why I went to him.

I had a CXR in the ER on 7/2/21, but it was done while I was sitting in bed. The report doesn't even mention the lungs.

I have a background in healthcare and a degree that included a lot off biology, A&P, etc, and have worked for doctors who have been great mentors, plus with having figured out that the migraines I had were actually cervicogenic and fixing that on my own, I know about the structures of the upper body, the course of nerves and their branches. My spine is a mess and I understand that isn't a guarantee for pain, but if something got out of whack back in Nov 2019 with one of my moderate disc bulges, it could be affecting the phrenic nerve or even anterior thoracic nerves, when I do certain activities. It's almost as if the doctors I've seen don't want to deal with patients who might know something about their bodies. So, we'll see what the neuro says.