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Copd??

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Old 07-14-2017, 03:16 PM   #1
winic1
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Default Copd??

Was trying to print off records from my patient portal with local doctors, but all it decided to give me was stuff from 2015.

But, as I looked through it, hoping to find the recent results I wanted, I saw the report of a pair of chest x-rays, which said (I may have the exact term wrong, this was two days ago I read it) that the x-ray showed "overinflation, consistent with COPD." I seem to remember that I also did some pulmonary testing at the same time. Testing all ordered by, and results sent to, my GP, not a pulmonologist. I was told everything was fine. No one has ever, ever, made the least mention of COPD.

guessing that maybe since the other testing didn't show anything (they only report the best run of each test, not all of them, and let/make you rest between runs and tests if you have trouble (yeah, brilliant, huh) so something like MG is not going to be detected) that they discounted the X-ray.

So, my question is, can MG, and being chronically short of breath like I am, mimic the look of COPD on an x-ray? I have no reason to have COPD, no smoking, no second hand smoke, no asthma, no nothing, other than I have lungs.

Or are the local doctors just even less competent than I already believe.?

Last edited by winic1; 07-14-2017 at 04:43 PM.
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Old 07-14-2017, 08:24 PM   #2
MG_Kat33
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I don't know the answer at all, but reading through past posts, especially from AnnieB, it could possibly be from MG. My guess: Your muscles aren't strong enough to exhale properly, causing CO2 to stay in your lungs, and you breathe faster and shallower to try and get more O2 without ever fully emptying the gases.

COPD usually has a cough that is productive and is worse in the mornings and with your history, they may have ruled it out, so never mentioned it?

Many of the x-ray, CT, MRI notes are kind of copy&paste and based solely on what the image shows. I learned some really interesting stuff about my anatomy from the MRI and CT notes (I'm a special snowflake in so many ways!), and also learned that the radiologists don't read patient histories. My CT scan showed no thyroid - did I have a possible history of thyroid disease?? Uhh, yeah, duh. Glance at my meds or my health history for 1 minute and you'd see your answer.

So yes, your doctors are probably about as incompetent as you believe, though I hate to be so down on them. It's very difficult to have a rare disease that presents with such a myriad of revolving symptoms. Most doctors just will not have dealt with a patient with MG, though that doesn't excuse how a lot of them write off our complaints as crazy or from anxiety, etc. and don't bother to read anything... bleh.

Sounds like you are doing the right things in getting personal copies of all your records. I've started keeping a journal of symptoms and other data (outside high temp, O2 sat and pulse sitting and reclining, changes I made in my daily routine, and anything else I notice) just these past few days based on reading through these forums.

Good luck! We're in this leaky boat together!
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Old 07-16-2017, 11:41 AM   #3
AnnieB3
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There's a big difference between a MG breathing pattern and a COPD one. Were the doctors being lazy? Possibly.

Request the results of both the X-rays and the breathing tests at the clinic. Portals only hold so much info. There are so many things that doctors do not tell patients!

If your MEP was bad the day of the X-ray, then maybe you couldn't get enough air out of the lungs. Duh, doctors. MG can cause an inability to inhale or exhale well enough.

Lung Institute | Obstructive vs. Restrictive Lung Disease

Restrictive Lung Disease: Background, Pathophysiology, Epidemiology

You need a good pulmonologist who understands MG. You need to be thoroughly evaluated for what is truly going on. COPD is serious. And treatment is key to that progressing too quickly.

Please, get those records and have a new evaluation. Someone should be able to figure this out!

Annie
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Old 07-16-2017, 11:47 PM   #4
winic1
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But on a lung x-ray, they tell you to take in a deep breath and hold it.
So, of course your lungs are full of air.
I breathe in too deeply? They told me to!
So, can MG make a chest x-ray look like COPD?

No one medical has ever cared about my shortness of breath. Strangers on the phone will notice it, and mention it, and ask me if I'm okay, when I am not noticing it because it is normal for me.

Doctors--nope. Tried to get one to listen to me, he told me that when people are paying attention to how they breathe, it's usually anxiety and best treated with anti-anxiety meds.....and that's when I told him off. No, you a-hole, I don't have trouble breathing because I worry about it, I only worry about it when I realize that I am having trouble breathing. And most of the time I don't worry about it, I just become aware that it is time to manage it.

They don't like being told off.

Honestly, I do not know how so many incompetent, uncaring doctors have concentrated in one place. Theorize that it's because we are an hour or so outside of NYC, and they all wanted to get into the big NYC places (many did part of their education there), but couldn't get hired there, so they settled here, as close as they could. So, basically, we have all the rejects. No idea, really, but it makes it more fun to imagine so.

go to see the fancy neuromuscular specialist at Yale on Friday. Going to spend the week trying to extract my test results from that damn portal. I can see all the recent bloodwork on the portal (one result at a time), but when I went to print it, I only got 2015, which I hadn't even been looking at. Hoping that in my older copies of stuff, I have the other things like the pulmonary testing, because when I had called them to get that just a month after having it done, they were all confused and finally confessed that for some reason it had been sent to the archive caves already (yes, they really send old medical records to storage in some flippin' caves somewhere in the region, and it takes many weeks to get them extracted. WHY then sent my recent tests directly to the caves without putting them into the computer first, or even sent them when they weren't old at all, no one could tell me. I so wish I was making this up. Unfortunately, I am not.) Office people are crabby, so if I need them to pull any of it up for me, oh well, probably not gonna happen.

Either that, or that report is someone else's that got mixed up with mine. That happens all the time. ALL the time. It's really scary how bad they are.
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Old 07-17-2017, 10:35 AM   #5
AnnieB3
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No, MG cannot mimic COPD on an X-ray. COPD involves inflammation, MG does not.

COPD - Chronic Obstructive Pulmonary Disease

Until you can find a pulmonologist who will reevaluate your situation, you will not have an answer to any COPD questions.

You have a legal right to your records. If they don't know where they are, they are either lying or are open to a huge lawsuit due to incompetence. Put a request in writing to the medical records department. Then wait. There's no need for name calling or being upset. Just ask for them.

I personally have found that being kind to people, even if they are not good at their jobs or not being nice, can provide better results.

All doctors can't truly be incompetent, given the boards they have to pass. There have to be some doctors who can help you.

I hope you find someone to help you.

Annie

Last edited by AnnieB3; 07-17-2017 at 12:04 PM.
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Old 07-17-2017, 11:38 AM   #6
ErinBear
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I did an internet search on this same question. I saw a response from a doctor, stating that it is very possible that the radiology report that suggested the other MG patient had COPD was probably just an error. Sometimes the radiologists don't get it right...they are human. That's probably why you didn't hear anything more about it from your doctors. They probably realized that it wasn't a concern, so they didn't follow up on it. I bet that your other symptoms did not fit with COPD.

Still, hopefully you can find a good pulmonologist, and they'll be able to check things over and find out how you are doing now. There are good pulmonologists out there. All of the pulmonologists I've met here have been good, and the one I see now is especially good. I'm grateful he's my physician. Hopefully you'll meet one that works well for you soon.

In terms of getting your records, yes, unfortunately, you may have to request them from the medical records department if you need them. It's annoying, but sometimes that is necessary. If you don't have them in time for your appointment, the doctor's office at Yale can also request them for you if they need them. These days, sometimes they can see them electronically if the other hospital has record-sharing.

I agree with Annie. It can be hard, I know, but you attract more bees with honey than with vinegar! I find that trying to be pleasant, honest, and kind with medical personnel has really served me well. It is tough when you are feeling so sick and you are feeling frustrated, but having smooth relationships with doctors, nurses, and the other people in medical offices can help with your goal of getting better medical treatment. I wish you all the best with your upcoming medical appointment.

Take care,
Erin
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Old 07-17-2017, 06:24 PM   #7
winic1
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Nobody knew I had MG at the time of those xrays. Nobody still believes it, except my ophthalmologist. Not even the neurologist who has me on pyridostigmine, because she's never had a sero-negative MG before. Is why she sent me to the super specialist at Yale, and hasn't wanted to see or do anything with/for me in the seven months I've been waiting for my appointment with him.

Only one pulmonology group in the area, up at the hospital. Been there, done that, got blown off. Yes, they saw the slowed, shallow breathing during the sleep study. But it wasn't sleep apnea, where you stop, so there was no reason to try a cpap and no further need to see me. But doc, what about the slow, shallow breathing when I sit/lay at certain angles? Yes, we saw that, you may have AN apnea but it's not SLEEP apnea. Good bye.
All the breathing tests? They only present the best run of each test type, when the reports are prepared. The techs yell at you, YELL, if you don't do it good enough. Dude, if I could do what you want, I wouldn't be here! No, do it again. DO IT!!!! DO IT RIGHT THIS TIME!!!!

Everything, and almost everyone, medical within 3 hospitals of us (one 20 miles north, one 30 miles south) is now owned by this one corporation. The doctors get penalized if they waste too much time on your visit. They are not allowed to refer you to other doctors outside the system unless there isn't one of that kind in the system. They are not allowed to diagnose without a confirmed lab report. They are not allowed to contradict a colleague's diagnosis or denial of a diagnosis--I was told that directly by an office manager when she called to tell me she was cancelling my appointment with a second doctor in that office. NOT ALLOWED to change a colleague's evaluation, and I was NOT ALLOWED to see a second doctor in the same group for a second opinion. You have to go outside the system to get a different diagnosis, then bring that report back in before anyone will be allowed to treat you for it. ALLOWED, whether they are willing or not is a whole 'nother matter.

And that goes for ALL the doctors around here, not just the pulmonologists. There are 3, only 3, rheumatologists here, all in one office. There is ONE office of ENT's. One office of endocrinologists, takes 7 months to get an appointment (not a first one, a follow-up), so heaven help anyone with diabetes who needs more than their gp can handle. One group of neurologists local, and all the good ones left when the group finally caved in and joined (let themselves be taken over) by the hospital corporation. The one I use is 30 miles away, in a group only partially taken over so far, so she still dared to try the pyridostigmine on me, even without a piece of paper telling her to. It's bad. Really bad.
Had a good endocrinologist, cardiologist, gp, orthopedist, etc.--they all left within the first year this corporation took over. Left the area. Moved to other states. Really. Every last one.

Only the optometrists and ophthalmologists in the area are not owned by this place. And one pediatrics group, who have aligned with one of the big NYC names, to protect themselves.

I can no longer drive. There is no public transportation here, even if I would dare to try traveling it alone. My husband has to go to work, if he loses the job we lose health insurance (and the house and everything), he only gets so many vacation days a year, to use on taking me to places like this doctor at Yale. (We don't vacation. Days are too valuable.) I have no IRL friends left, they have jobs and kids and lives, cannot take their days off to take me places.

So, there will be no better pulmonologist. I will likely be stuck with this crappy neurologist, who is better than the ones I've seen before who wouldn't even bother to try the pyridostigmine since the AChR test said negative, end of story, go take a walk, you'll feel better.

Sixteen years, YEARS, I have been trying to get this figured out.
I get mad at my family if they put the cups in the cabinet stacked instead of singly, because stacked cups mean I have to hold my arms up longer, while I separate a cup out, all that time, what, 10-20 seconds, of my arms screaming "I can't stay up like this!! Let me drop down!" while I desperately try to get that cup free before I have to stop and rest and then try again. Sixteen years. So when some a--wipe of a supposed doctor starts telling me to stop being anxious and go take a walk, I'll feel better, he's likely to get told off. I am now too old and too cranky and too fed up to be blown off anymore. And, what the hell, if they're already blowing me off, there is nothing to be lost.
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Old 07-17-2017, 06:52 PM   #8
AnnieB3
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I can truly appreciate your frustration and anger. I was treated the same way by local neurologists.

Perhaps you can ask the neuro you are seeing if they can have breathing tests done there that day.

I'm sorry you have had these experiences. What your state does have is a medical board. If this has become so horrendous that you can't receive appropriate care, then a medical board complaint is warranted. However, that would probably only make the relationship with these doctors worse.

I wish there was more I could do to help.

Annie
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"Thanks for this!" says:
ErinBear (07-17-2017)
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