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Mysterious shortness of breath: What has helped you?
Lung Health | Last Active: 28 minutes ago | Replies (3358)Comment receiving replies
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.
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@dbkl I know people on the facebook page for people with paralyzed diaphragms have recommended getting MRIs done to see if anything is pressing on the phrenic nerve. It's been fascinating to learn about all the things people there think caused damage to their phrenic nerves and paralyzed diaphragms, such as Parker Turner Syndrome, damage during operations or from accidents, vaccinations, etc. Maybe something was pressing against your phrenic nerve and caused/is causing your problems. I'm not really understanding why you think you might have a paralyzed diaphragm and hope you will get a chest x-ray and other tests, like the sniff test, to rule it in or out. I am astounded at the ignorance, disrespect, flippancy and lack of concern and caring exhibited by your doctors. It sounds as though you need a whole new team of doctors; and I hope you can visit a place like the Mayo Clinic that takes a team approach where doctors from different disciplines work together to assess and treat difficult cases. In the meantime, I urge you to join the facebook group for people with paralyzed diaphragms. Many people in the group have multiple health and lung issues; and your symptoms and what you are experiencing might resonate with someone there. I've learned an incredible amount from them and think the collective knowledge and wisdom of the 800 people in the group surpasses that of most doctors, who frankly don't know much about paralyzed diaphragms. I hope you'll let us know what the neurologist says. Please take care, keep looking for doctors who can help you, and don't ever doubt yourself and your symptoms. You know when something isn't right.