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Progressing Breathing Difficulties

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Unread 01-28-2013, 12:36 PM   #11
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When you go for IVIG drink lots of water the day before and morning of.
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hankster1 (01-28-2013)
Unread 01-28-2013, 04:19 PM   #12
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Glad your getting some help!!! 2 years ago I was desparate for just ANY trial of treatment.. they kept running tests.. waiting for the results, when they would come back, run more.. etc etc.. all while I was declining.. it's a scary position to be in!!!
I second mikes advice for drinking lots of water! Good luck, praying you see some great results from it!
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Unread 01-29-2013, 01:18 AM   #13
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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?
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Unread 01-29-2013, 01:30 AM   #14
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Seishin, Yeah, maybe bring some pliers next time to dislodge the arrogance that's stuck in their whatever. 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.

And it sounds like it was more of a battle than a patient-doctor team, calmly trying to figure out what is best for you. Once you go down that road of arguing with a doctor, it hardly ever ends well, unfortunately. On the other hand, they should have listened to your concerns because that is your right as a patient too. Oy.

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.

There are a lot of causes of a higher than normal hemoglobin. Again, see your primary doctor so they can help you figure all of this out.


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

Last edited by AnnieB3; 01-29-2013 at 01:52 AM.
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breathing problems

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