[seishin]

Well, I went to the E.R. today for the exacerbated breathing difficulties and had another frustrating & shaming experience with an E.R. doctor. He said he could tell "without doing tests" there was nothing wrong with me. When I called him on it, he said he'd gone to school half his life to be a doctor & had the training to tell when someone was okay. There was nothing wrong with me because the CBC was fine & the chest x-ray showed nothing,.. my oxygen levels were fine (at 96% from that clip on the finger). He tried repeatedly to send me home at that point, but I pushed back & kept pushing back again & again (I used the cards "show me the hospital's patients bill of rights" and "If I fall down dead in your hall on the way out, will you take responsibility for having discharged me?"). Finally (5 hours later), a respiratory specialist came down and did Positive Expiratory Pressure (PEP) and Negative Inspiratory Pressure (NIP) twice. She wrote down just the best reading. When I questioned whether there should be more of those tests to create a sequence & pull all the numbers, she told me 'no' because each subsequent reading becomes weaker in everyone, not just in MG.

I showed a 'before MG' picture so they could see what I'm supposed to look like. And I asked for an arterial blood gas & walking oximetry probably 20 times but they didn't do them. The doctor said they pulled special strings to do the tests they had done & that I shouldn't be at the E.R. for any more tests.

The discharge paperwork recognized I had 'chronic dyspnea' (which is more than the doctor acknowledged in his diatribe of how I was "fine") and said I should schedule with a pulmonologist for any further testing (which I tried to do this morning before going to the E.R., but I couldn't find any place to get me in before Feb or Mar).

All in all, they did PEP, NIP, FVC & FEV1? and said the readings were fine. What they didn't mention (and what I didn't see until I got home) is that the hemoglobin level was high (at 15.6) which the Mayo site says "Your red blood cell production increases to compensate for low blood oxygen levels due to poor heart or lung function." Also, my resting heart rate at the hospital was 93 and my blood pressure was 159/97 (normal for me is 90/60+).

I've gone to a friend's house & I'm camped out here until the neurologist's appointment. I'm still lightheaded & have the same MG symptoms to a lesser scale. I'm resting a lot.

Question: the GFR was low with value of 57. Does that mean anything in particular for MG?

From what I've relayed to you, do you see anything I should have done differently or should consider doing if there's a next time?

(Note, this thread's content was copied from thread: 'Progressing Breathing Difficulties'. Following is AnnieB3's response copied from other thread)

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AnnieB3: Seishin, Yeah, maybe bring some pliers next time to dislodge the arrogance that's stuck in their heads. You can't tell by looking if someone with MG is okay. What a moron. Sorry, guys, but sometimes doctors deserve that. I guess "all his years" in medicine didn't really help him help you. Sounds like an insecure doctor more concerned with his ego than your health care.

I added something to my other post about this. You could've asked him if he can tell by looking if a cancer patient is worse or if a kidney transplant patient's kidney isn't working or if a patient no longer has pneumonia. Objective tests are the ONLY way - plus a good clinical exam - to tell if an MG patient is okay.

Can you do a new post, when you feel better? I don't want your concerns getting lost in someone else's post. Your treatment was ridiculous. No, the MIP and MEP are NOT increasingly lower in normal people. When my MG is okay, my readings are the same exact readings over and over again. Good grief.

Talk to your primary doctor about the GFR. 57 is getting low and you might need a referral to a nephrologist to make sure all is well with your kidneys.

Don't talk too much right now because that makes breathing worse.