No cause found for recurring right hemidiaphragm paralysis

Posted by Machak @machak, Jan 4, 2019

Has anyone out there experienced paralysis of the hemidiaphragm that comes and goes? I've been experiencing this for years with no diagnosis, but the symptoms are getting worse as time goes by. When it becomes paralyzed my lung capacity drops by about a third, breathing becomes labored, and oxygen saturation drops (making my heart race to try to compensate). I've gone all over the country looking for answers, but no one has been able to explain it or suggest how to treat these episodes (much less prevent them). The diaphragm stays paralyzed for a while then starts working again. The longest it has stayed paralyzed was about 6 months, but most often it is a couple of weeks. It then starts up again, but eventually starts getting weaker and stops moving again several times a year. it severely impacts cognitive ability memory formation when the O2 starts dropping, which has made continuing in my job impossible.

@machak I have never heard of shrinking lung syndrome. When I searched the term on the internet, I found several articles citing it as a rare complication of systemic lupus erythematosus (SLE). Do you have SLE?

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@merpreb

@machak – I'd like to share a group that you might be interested in joining. https://connect.mayoclinic.org/discussion/phoenix-nerve-damage/
I think that you will enjoy meeting others who have similar problems. I'm going to pass your name to them to. Let me know how it goes!

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Merry, may I correct you, It's called the phrenic nerve. Two of them, one for each diaphragm.

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@colleenyoung

@machak I have never heard of shrinking lung syndrome. When I searched the term on the internet, I found several articles citing it as a rare complication of systemic lupus erythematosus (SLE). Do you have SLE?

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Depending on which doc you talk to, yes, I fit the SLE category, though others say other autoimmune processes.

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Hi this is John, has anyone mentioned or checked the phrenic nerve that controls the diaphragm?

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@machak You might want to try myofascial release therapy with a physical therapist. I've been doing MFR work for a few years and having good results. You might have tight fascial tissues causing nerve entrapment and compression. Here is our MFR discussion for information. MFR can help a lot of physical issues.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
There is also a surgery practice that grafts a nerve to replace the phrenic nerve to treat a paralyzed diaphragm. There are also breathing pacemakers. That website is advancedreconstruction.com I have a lot of experience with MFR, but not with diaphragm paralysis, and I do have tight muscles through my chest because of thoracic outlet syndrome and my therapist does releases for the diaphragm and I breathe better after that. TOS affects breathing because of tightness of chest and neck muscles. Another member had shared information about a doctor in this practice, so I'm just passing that along and I have no experience with them. I can understand how difficult and worry some it must be to have low Oxygen levels as well as exhausting. I have asthma and when I've had excess phlegm with an infection, I've experienced a racing heart rate and taken myself to the ER for that when my resting heart rate was over 100 beats per minute. There is an MFR provider link at the MFR website and you can find providers who are expert level MFR therapists.

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