Wow. This really freakin' stinks!!!!!! Without the emg and the antibodies you must feel like a sitting duck right now. Why does it have to be so hard for some of us to get treatment? I totally feel what you're saying about being so exhausted from the disease anyway, and then to have to find the strength to fight for treatment is overwhelming. Aaaarrghhh. It's even worse for those of us without much family support. How many times can you pick yourself up?!?
I totally understand worrying that you're going to end up dead or in the icu before you get the help you need. It's terrifying. And frustrating.
I know we've discussed this before, but my MEP is always much lower than my MIP too. When I was in the hospital it stayed low the whole time. I can't understand why MEPs are dismissed. Do you have any insight into that? Have you ever had lung volumes done? My ERV (expiratory reserve volume) is always really low too. On the last three tests 38%, 33%, and 53%. My understanding is that that is a measurement of when you breathe out and then they tell you to keep breathing out as hard as you can - it's what we can breathe out, but don't with a normal breath. I mention it because I wonder if yours might be the same. On the first test the respiratory tech told me that it was indicative of neuromuscular weakness (and our expiratory muscles obviously seem very weak) but it didn't come up at all in the report by the pulmonololgist. I just received the 2nd and 3rd reports (done in California) and the pulmonologist report reads: reduced ERV due to obese body habitus (I'm not obese),
neuromuscular weakness, thoracic cage abnormality (not a problem) or pleural disease (again, no). The amazing thing is that the neurologist has been telling me the whole time that the pulmonary tests don't show neuromuscular weakness. What the heck?!? Anyway, I did want to run that by you because we both have these mysteriously low MEP. I'm going to drop off the reports to the local pulmonologist here and I'll let you know what he says. You sound like you have a great pulmonologist, btw.
You mentioned that your pulmonologist confirmed that your diaphragm strength is declining. Was that reflected in any test other than the MEP? If I remember correctly, your spirometry - like mine - is normal. Am I right?
I wonder if you could have your pulmonologist right a scary letter to your insurance company outlining the bad direction this could be heading. Maybe they need to be educated on the danger they're placing you in.
If you can get hold of a bipap, my advice is to get it ASAP. My bipap has saved me many, many times. I don't know what I'd do without out. You'll hear a lot of complaints that it's hard to get used to but I'll tell you what: it's not hard to get used to when you feel like you're suffocated and that thing is helping you breathe. It's actually about the best feeling in the world. When was the last time you were checked for apnea? It seems hard to believe that you can't breathe at night and they can't detect that. That's really frustrating. I know it's one night away from home, but maybe you can get them to re-test you since you're breathing muscles are even weaker. During rem the ONLY muscle not paralyzed is the diaphragm which is working all by it's poor, weak self so theoretically they should be able to pick up some problems. Anyway, I can't recommend the bipap strongly enough. There have been uncountable times when I crawled up to my room, exhausted with horrible air hunger and slapped that mask on and was able to come out of it even as short as an hour later.
On a lighter note, my son just told me that when he grows up he's going to get me a house in the woods where I can relax and be happy - complete with a neurologist bobo doll. Okay, that really made me laugh. No offense to anyone in the medical field!!!
One more thing - there is no way I could work even close to a 40 hour week. Too bad because I'm going broke FAST. But it's absolutely exhausting and crushing to read about what you have to handle. I agree with the other posts that you should look into at least short term disability through your work. What you are having to accomplish just trying to keep your head above the water is inhumane.
Try to hang in there - we're all pulling for you!
Ally