Breathing problems associated with CMT are often ignored because most doctors don’t know they can be part of the disease.
What to do if you think you have CMT related breathing problems:
- Have your doctor send you to a cardio-pulmonary specialist for a sleep study.
- Suggest that your maximum inspiratory pressure (MIP) and maximum expiratory pressure (MEP) be tested both sitting and lying down. The latter is very important.
- If you are having bad morning headaches you could be retaining CO2. The above tests will show that.
- You can elevate the head (from the waist) of your bed two or three inches by putting bricks under the legs or a suitcase under the mattress.
- You can keep your weight down.
- Make sure you have had a pneumonia and flu vaccinations (ask your GP) and treat respiratory infections aggressively.
Many of us with CMT breathing problems live active, good lives thanks to treatment and/or mechanical breathing aids. You will, too!
This video by Professor Mary Reilly explains breathing issues
And this video, made by CMTA, explains what’s going on in more detail