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Undiagnosed low maximum inhale/exhale pressure
I feel my breath is becoming weaker: less air coming out of nose since April 2021, three weeks after the getting the 1st dose of COVID vaccine. I didn’t get a chance to see a pulmonologist until August, 2021. In the PFT report, only maximum inhale/exhale pressure(MIP/MEP) is below the lower limit of normal. Up to now, I have visited the Pulmonologist 8 times, and the MIP/MEP is consistent abnormally low. And my breath is extremely weak now: ver poor air out of nose. Neuromuscular doctor did EMG and no muscle problems. In December 2021, I did cardio-pulmonary exercise test and showed that my VO2 is significantly reduced. And I reached the peak at low loads with acidosis. I feel a lot pain in the calf after a little exertion.
The pulmonologist have no answers.
My brain MRI showed basal ganglia calcification. This is the only abnormal things. The neurologist explained to me it is not related to breathing.
I only sleep 4 hrs now. I feel very sleepy in the night and 4 hours later I woke up, cannot fall asleep. And my left leg jerks before falling asleep.
The doctors I have visited don’t know the causes. I am suffering everyday without any knowledge of how to get better.
Since no organ problems have been found, I do believe some part of the brain is not functioning well. Up to now, I have done CT and MRI of the brain. Don’t know what kind of tests can be done.
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Hi @yli130, it sounds like you have been to see many specialists. Are you being seen at a large medical facility where these specialists are working together? Have they now recommended seeking a consult in neurology?
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1 Reaction@colleenyoung Thanks for your comments! No, I visited these specialists in their own clinics. The cardiologist and pulmonologist talked to each other. For neurology, I have seen two general neurologists in town and one neuromuscular specialist at Duke University. The neurologist at Duke don't think the basal ganglia calcification is linked with breathing issues. In the beginning, my pulmonogist thought it was neuromuscular problems as MIP/MEP is related to muscle strength in the PFT report and I have muscle twitches. He referred me to see the neuromuscular specialists. The EMG/NCS reports came out normal. There is no disease for my symptoms. Not sure which neurologist specialist to consult.
Came back from Mayo at Jacksonville, FL. See neuromuscular disease doctor and pulmonologist. The EMG/NCS again is normal. The lung doctor told me that PFT results are normal, no respiratory muscle weakness though the MIP/MEP is abnormally low. He said he cannot explain why the MIP/MEP is low; but be sure that it is not due to lung problems. I do believe that it is not lung problems. I can feel the poor airflow especially when doing highly focused things such as driving and working in front of the computer. I feel horrible every day. I am now living by faith in Bible.
Have you tried a CPAP machine to sleep with? It helps people with breathing while asleep using positive pressure to keep airways open.
Thanks for the comments! @willows My airway is not blocked. And my sleep study is normal, no sleep apnea. The doctor said I am not qualified to use CPAP.
I suggest you get a spirometer and capnograph and record supine FVC and co2 levels. This is usually not done in the sleep studies for adults. You can also get a consult with Dr John Bach at Rutgers. I also have the same exact issues with baffling low MIP (-37). What is your MIP? Try propping up when sleeping and also ask PCP for an anti histamine or safe med to help you stay asleep.
If you had a sniff test, I also recommend contacting Dr Matthew Gordon at Temple/Philadelphia. He ordered special ultrasounds of chest to see if you have chest wall issue. Do you have relatives with autoimmune diseases and did you get a work up for HLA-B27? That affects the chest wall.
If you didn’t have them already, ask a Dr for Ana/anca, ace, a1at and myositis panel if your ESR/CRP are elevated. You can also do a myasthenia panel. If they won’t order you can buy online and take the report to a PCP for consult. If they are all negative, you can try lowering bmi to normal (ozempic, noom?) and exercising 15 minutes twice a day. Albuterol may help if you run out of breath while exercising. Avoid cold air and hopefully things will get better.
I’m just guessing from your ID, do you have Han Chinese ancestry? I do have it and in my population MIP is already low despite good respiratory function.
Another reason for low MIP is COPD. Is your pef value low? You can use an online calculator. If you have family history of copd, a screen for a1at May reveal the issue. Otherwise the MIP has to be repeated with another tech/hospital.