August 17, 2008 at 10:46 am

Beth, ditto what Emma said. The cardiac drugs can make you feel like a real dishrag, especially an ACEI. It does get better. Unfortunately, I do have a bunch of experience with CHF and respiratory issues. I was diagnosed with severe cardiomyopathy with clear coronaries 6 years ago. At that time I was transplant material, with an EF of 15%.

I gradually got better heart wise and did not need a transplant, thank the Lord! But, the shortness of breath never went away. I was diagnosed with mild restrictive lung disease the same time as the CM. My CHF has mostly been well compensated, but the lung guy blamed the SOB on the heart, and the heart guy blamed it on the lungs. I DID have mild pulmonary hypertension, so it seemed for a couple of years that PH was to blame.

Fast forward 4 more years and a zillion more tests, with right heart caths, several cardiopulm. stress tests and every blood test know to man for any autoimmune diseases, and we finally got an answer. Well at least we have PART of an answer!

The pulmo finally had resp. muscle strength tests done in addition to the many regular PFT’s I had had done, and it showed significant resp. muscle weakness. I do not have paralyzed diaphragm, but severe bilateral weakness. The neuro initially suspected a mitochondrial myopathy b/c I have upper body weakness and it fits with the cardiomyopathy and my severe reflux. So I had a muscle biopsy done, which did not show a myopathy. Eventually I had an EMG of the diaphragm, and it showed an active demyelination and remyelination of the phrenic nerves bilaterally.

So that’s where we are now. The neuro, from a university setting and a neuromusc. specialist, thinks I may have an atypical CIDP or possibly a multifocal motor neuropathy. From my research it seems that MMN can present initially with resp. muscle involvement. I do have some random other neuro things, but my right sided EMG and NCS were normal, and I have normal reflexes. I just finished my second round of empiric IVIG. I have been on oxygen at night for almost 5 years now, and as needed for 2 years. I started bipap 7 months ago (no sleep apnea)and it has made a huge difference in my energy level. I continue to get severe resp. muscle fatigue, especially out with friends and laughing and carrying on, which is a horrible feeling. The bipap gives my muscles a rest, but if I didn’t live alone and therefore don’t talk much, except to myself 😀 , I would need the o’s 24/7. Sometimes I have to go on the bipap during the day just to make it through. I DO NOT want to end up on the bipap or a vent 24/7! I desat to 85% within 30 seconds when lying flat and awake.

Sooo, Beth, I would encourage you to see a pulmonologist asap, and get them to do the usual PFT’s plus the resp. strength ones. They are called MIP’s (maximal inspiratory pressure) and MEP’s (max expiratory pressure). Btw, my neuro now says my arrhythmias and CM are unrelated to the neuro stuff, and just bad luck!

Speaking of bad luck, and totally off topic, I drove to northern lower Michigan Friday night and hit a deer on I-75! 😮 I managed to slam on the brakes when I saw her, but couldn’t avoid her and luckily the guy behind me didn’t hit me too! I am ok, but the car had to be towed. What a PIA! They had better get it fixed before I am due to drive back in 2 weeks!