[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.

[AnnieB3]

Seishin, You should be resting. Adrenaline really kicks in when you've been mistreated like that. They probably thought you were fine since you could speak. Yet another MG misconception. Do we have to "fake" or exaggerate our symptoms in order to get adequate health care? No, I don't recommend that!

Maybe we should simply stare at the ER doctors, open our mouths as if to speak and then say nothing. I wonder how they'd respond. They don't like it when we stand up for ourselves.

I think a trip to your primary doctor is in order. You should have them assess both the GFR and the high hemoglobin. Ask them to send a letter off to the ER doc you saw too, plus any results. You need full PFT's to truly assess what's going on and how bad you are.

I have had one too many ER trips, many not MG-related, that were not good that it's really hard for me to go in. But who else is there to help us in an emergency?!!

I'm so sorry that this is the typical way MG patients are treated. It is ignorant, NOT objective and unethical. You did not deserve it. Get help from other doctors like your neuro, primary doc and pulmonologist.

It also might help if we got "treatment letters" or protocols written up by our neurologists to give to the ER when we arrive! I have asked doctors to do that in the past any time I've had a diagnosis. It does help.

I hope you're feeling better soon. I am beyond sorry for what you had to go through.


Annie

[alice md]

Hi,

The combination of abnormal renal function with dyspnea and overall relatively normal respiratory tests evidently out of proportion to the degree of breathing difficulties, combined with generalized weakness would make me concerned that you may have some metabolic problem.
The most likely explanation for the combination of a high Hgb and abnormal renal function is that you are dehydrated. But, this has to be followed and properly assessed.

If I was the doctor in the ER, I would definitely draw an ABG to see the pH.
I would also want a urine test.

Maybe you have got metabolic acidosis, and that is why you are so unwell and having to breath fast.

I don't know what has happened to medicine. When I was in medical school we had a one year course in which we just learned to take a medical history and examine the patient. We had to generate a differential diagnosis only based on that, without even one test.

My son is now studying medicine and not only that they do not have such a course (instead of it they have a course in which they discuss the humanistic aspects of medicine without seeing any real patients), they have seen an MRI of the brain before they saw any patient. They were told about treatment guidelines and state of the art treatments for cardiac diseases, before they were taught how to diagnose those diseases.

It seems that modern medicine is becoming like someone who has a very sophisticated jet plane, but has no maps and no idea where and how to get anywhere with that plane. So, he is just circling around in the sky and looking very impressive, making sure that the plane has comfortable seats and state of the art modern equipment in it. Every now and then he reaches a destination making him feel even more content and even less aware of the lack of direction in his journey.

I am sorry if I sound like a grumpy old physician, remembering how great medicine was when I was young. I know that there have been major advances and breakthroughs since I was a med. student . But, really I think both physicians and patients should wake up and realize that simple is beautiful and we don't need all those sophisticated, expensive tests to know that a patient is unwell.

[seishin]

Thank you for the feedback, Annie & Alice.
You've given me some really good guidance. Annie, I love the idea of getting a 'treatment letter' or protocol written by the neurologist. Alice, I'll make sure to follow through on getting the arterial blood gas and urine test.

By the way, can just about any type of doctor order an arterial blood gas or does it have to be done by a pulmonologist? Pardon my ignorance.

[southblues]

Regardless of whether your symptoms were MG related, I am concerned about your hypertension. You are approaching stroke level. They didn't do anything about that?

"resting heart rate at the hospital was 93 and my blood pressure was 159/97"

You are about to blow a gasket.

When my BP gets that high, I am short of breath.

Like Alice said, they just did a bunch of tests, but they forgot to look at the patient.

[Israel]

I feel your frustration. Before I was diagnosed with PD, I went to th ER. The attending doctor said that it was all psychological, and told me not to come back to the ER. I felt like a child being slapped across the face.

[AnnieB3]

Seishin, The pulmonology nurses, in my experience, are the BEST at doing ABG's. But any nurse should be able to perform one. They can be painful due to all of the nerves they have to go through to get to the artery but it's a doable pain.

Good one, Alice. They don't teach "pathophysiology" in med school anymore, like you said. Well, some do but not many. It's very sad. I've read some really old books where they go into excruciating detail of a patient's condition. It was fascinating.

Celeste, That's a good point. It sounds like Seishin's BP is normally low, so that was a pretty huge jump!

I'm sorry for your experience too, Israel. An ER doctor once told me that they don't diagnose in the ER, they only "manage symptoms." Sounds like an excuse to me since they diagnose broken bones, strokes and so many other conditions.

Annie

[Quandry]

It's really disheartening to go in as well prepared as you were and still not get the help. There should be some kind of repercussion to doctors who don't follow through.

[seishin]

I just found out I registered negative on the Musk tested (all negs )
Hopefully, the MG expert neurologist will be able to open some doors & take the lead in coordinating health diagnostics & tests. I'm over my head with this.

I've contacted the pain specialist who I'd tapped as my primary doctor & am waiting to hear back about ordering arterial blood gas, urine test & maybe echocardiogram. I've asked for his input & opinion and officially asked if he's willing to be my primary (since it was a presumptive decision on my part). If he's unwilling or unable, I've asked him for referrals to a primary doctor with his similar skills (excellent listener & participant in conversation, takes initiative at explaining things, appointments last one hour).

On a positive note, I also heard from a lawyer with Advocacy for Patients with Chronic Illness and they're willing to help with the short-term disability appeal free of charge. VERY appreciated since I'm missing work & am now without salary. (And yes, I've submitted FMLA paperwork).

I appreciate everyone's support & input. Whether this is MG or some other autoimmune-related or other illness, the rose-colored glasses are coming off. I'm becoming quite concerned due to constancy of symptoms making it hard to breathe & sleep. I'm ready to tag someone else into the ring for a while.

[seishin]

A question re: MIP and MEP tests.... For those MGers who do the test, how many readings of each is typical? (e.g. I had two of each but that sounds inadequate.)