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Myasthenic Crisis

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Unread 11-25-2012, 07:51 PM   #1
seishin
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Confused Myasthenic Crisis

This has been a long holiday weekend.... I don't yet have a diagnosis but here's my symptom history:

fluctuating ptosis (droopy eye) -- 41+ years (since at least age 3)
difficulty breathing /severe shortness of breath when exercising -- 19-20+ years
racing heart, extremely elevated heart rate (200+bpm) when exercising -- 19-20+ years
(Note: was diagnosed with ‘Exercise-Induced Bronchospasms not associated with asthma’ Aug 2011)
memory loss -- many years
muscle spasms/tightness in leg that wouldn’t release or relax (right now seems fine) -- 3-4 years
severe lower back pain -- 3-4 years
sleep apnea (suspected) -- 1 year or less
increased sensitivity to noise -- 3-4 months?
fasciculations on monitor during cervical decompression therapy (actuator tension works to create defensive contractions 30 milliseconds ahead of the body. Whereas a typical bodily response is for the line to become steady with relaxation, mine became extremely erratic the more I relaxed -- June-July 2012)
pitting edema in legs & face -- first noticed after working out 2 mths ago or so

mid-Oct 2012, I started using Whole Body Vibration Machine to try & reduce pitting edema. Machine is also known to ‘tone muscles’. I believe it triggered excess muscular fatigue which led to the sudden addition of multiple symptoms:

bruxism (teeth grinding) - broke off a crown, loosened a tooth & 2 other crowns (have started using mouthguard) -- Oct 2012
choking -- most recently during last 2 weeks
imbalance -- during last 2 weeks
urinary incontinence round the clock -- during last 2 weeks
worsening of shortness of breath -- during last 2 weeks
hearing worsened -- noticed it during last 2 weeks
blurry vision -- noticed only 1-2 times during last 2 weeks
aspirated saliva & liquids multiple times -- during last 2 weeks, 8 incidences
regurgitating into oral cavity -- last 2 weeks
arm, shoulder & hand weakness & pain -- 2 weeks for arm weakness, ache since Nov 24
leg weakness & muscles burning sensation -- noticed 1 week ago
substernal chest pain with chest pain flaring up when lying on left side -- since Nov 21 or 22
excess saliva & drooling -- since Nov 21 or 22
pain in back of neck -- since Nov 23

My mom had four (known to me) Autoimmune Diseases, I have three known with MG being the 4th if it is diagnosed. And I know those with vitiligo & Hashimoto's and severe B12 deficiency are inclined toward myasthenia when collecting add'l Autoimmune diseases via what I've read about Type 3 MAS or PAS 3C.

Long intro. Anyway, my point....

I went to the E.R. Black Friday, concerned about myasthenic crisis (because of chest pain & 7 (at that count) incidences of aspirating fluid in 2 weeks). Internet & BCBS nurse said I should go so I did. The *edit* of an E.R. doctor accused me of being a hypochondriac & said I've spent too much time online. *edit* ever. Anyway, I left after he refused to do any MG-detecting tests other than acetylcholine AB which takes a couple business days for results. Meanwhile, I was sent home. My concern: despite resting pretty much round-the-clock, the chest pain continues & becomes near constant if I lie on my left side. The pain also shifts from the center of my chest more to the left side. Should I be concerned? Do I need to go to the E.R. again despite the likely repeat poor reception & financial expense? Am I being stupid to think I can wait until tomorrow to finally speak with my doctor & other health professionals who were absent during this frustratingly long holiday weekend?

Last edited by Chemar; 11-25-2012 at 08:47 PM. Reason: Language Guidelines
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Unread 11-25-2012, 09:08 PM   #2
southblues
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If I had severe chest pains, I would be concerned about whether I was having a heart attack. Myesthenia gravis does not tend to be painful.
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Unread 11-25-2012, 09:12 PM   #3
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seishin, I'm sorry you had such a bad ER experience. Did you go by ambulance or were you driven in?

Aspirating fluids or food is not normal. Neither is chest pain. There could be many reasons for it. I cannot believe they didn't even do a chest x-ray! That's usually the very LEAST they do for chest pain. Other things are D-Dimer to test for a blood clot, basic blood chemistry, O2 saturation, etc.

Chest pain is an emergency, no matter what the cause. And with pitting edema, I'm beyond shocked that they didn't do an ECG at the VERY least. Ditto on what Celeste said about it possibly being angina or something worse.

You really do belong in the hospital/ER. Let me give you a couple hints on how to deal with them. First, do not say more than you have to. Keep it simple. Then, do not allow them to give you the same doctor. Chances are the shifts will have changed anyway and new docs will be on. BTW, tears don't hurt. That's sad but true. If you act like you know everything, they often think you're a hypochondriac needing attention on a holiday or think you aren't sick enough if you can actually think and talk.

If they still won't help you, you can always pull out the big guns later like asking for a patient representative or an administrator (good luck finding one on a Sunday).

The bottom line here is that you have significant symptoms and are in pain. You need help. So, just go get some. If your insurance pays for an ambulance, just dial 911. Chest pain is nothing to mess with. You might have aspiration pneumonia!!! That's dangerous too.

If you get worse during the night and have opted not to go in now, then do it right away. You don't want to mess with this. If you do have MG, then it's an emergency too! And there are other tests like pulmonary breathing tests, an arterial blood gas, clinical exam to test for muscle weakness, etc. that the dimwit (an alternative to a swear word that still describes indignation!) could've done.

Also, you might have MG AND something else going on. Don't assume anything when you have serious symptoms. Let the doctors try to figure it out.

I hope you get the care you need soon. Hang in there! And try not to make doctors your enemy. Be as kind to them as you can and they'll probably be that way in return. I know, that's hard to do when you don't feel good and aren't getting good help.

Annie

Last edited by AnnieB3; 11-25-2012 at 10:53 PM.
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Unread 11-25-2012, 10:45 PM   #4
seishin
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Default MG crisis cont...

Hi and thank you for the speedy feedback.
A couple clarifications: I wouldn't classify the chest pain as 'severe'. It's been spotty & happening less frequently until I decided to switch to my left side while lying down. Then the chest pain was fluttering & more continuous, never getting above like a 4 on the pain scale. The first couple days, the pain was more in the center of my chest. On my left side, it felt as if the pain had also shifted to the left side of my chest.

At the E.R., they did the regular tests when a person shows up at the hospital complaining of chest pain & aspiration. So they did an EKG, an x-ray, took my blood pressure & whatever else that machine measures that you're hooked up to. They did blood chemistry test & O2 saturation test. The guy made sure I had pitting edema & shined a flashlight in my eyes. All of the regular E.R. machines registered me as 'normal'. When I described MG-specific tests not having been done, I was referring to arterial blood gas (ABG), MIP and MEP breathing tests, oximetry while walking &
clinical exam (unless pushing on my legs & shining a light in my eyes equals 'clinical exam'). In response to your question, my friend had driven me to the E.R.

Changes since Friday, my voice is becoming more normal. the urinary incontinence is less (thank friggin' god). My arms, hands, shoulders & neck are more strained, but I attribute that to having my arms crooked while holding the phone to my ear for long periods of time.

Unless I'm 'out-voiced' on this site, my decision is to sleep on my RIGHT side & wait until morning. I've already been dealing with this for two days at home after seeing the dimwit E.R. doctor on Friday. The suggestions for how to kowtow to the doctor is appreciated. I'll have to see if I can rein in my tongue. Alright, I hope I'm not making some big stupid mistake....
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Unread 11-26-2012, 01:06 AM   #5
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You should also know that women often have heart attacks with absolutely NO pain. Men don't always have pain either. I honestly can't tell from your post if you're a woman or a man!

Did you get copies of everything that they did? If not, call and get them (they should be free). Sometimes ER docs do not tell you everything.

You may have to do doctoring with more than one specialty. I hope you have a primary doctor who can coordinate it all for you.

One of my pet peeves with doctors is when they don't find anything right away and declare that you're fine. No way is someone fine with the symptoms you're having. All it means is that the right testing wasn't done yet. Or the right thinking.

Just go in if you get worse.

Annie
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Unread 11-26-2012, 02:32 AM   #6
alice md
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Quote:
If you act like you know everything, they often think you're a hypochondriac needing attention on a holiday or think you aren't sick enough if you can actually think and talk.
Sad, but true...
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Unread 11-26-2012, 09:14 AM   #7
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Two thoughts on the chest pain--pleurisy (I had that earlier this year--owie!) or the "MS hug." Some of your symptoms--the incontinence, burning pain, balance, cognitive changes sound much more like MS than MG. Have you ever had an MRI?
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Unread 01-17-2013, 03:27 AM   #8
seishin
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Quote:
Originally Posted by 4-eyes View Post
Two thoughts on the chest pain--pleurisy (I had that earlier this year--owie!) or the "MS hug." Some of your symptoms--the incontinence, burning pain, balance, cognitive changes sound much more like MS than MG. Have you ever had an MRI?
Sorry for the super slow response. Yes, I had a MRI, it was normal. I've read that the above symptoms can be connected to MG. I think the onslaught of symptoms were partly triggered by regular use of a Whole Body Vibration Machine which works by rapidly contracting muscles throughout the body, setting off system-wide muscle fatigue very quickly. In retrospect, not my best move.
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Unread 01-18-2013, 04:17 AM   #9
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Is your weight within normal ranges? If you were overweight I would think many of these symptoms might be attributable to that. I think a lot of them are rather vague and could be attributed to daily living, not MG. It looks like it has been about a month and a half since you posted this, what is the update now?

I think we have to be careful to utilize the emergency room only when we are really in an emergency, because it goes on your records and you will get flagged if you use it over and over for non specific complaints that aren't really serious. What has your follow up been since this happened? Are you feeling better?
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Unread 01-18-2013, 04:30 AM   #10
AnnieB3
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Tracy, I have to disagree in part with what you're saying. I also have to say that being overweight does not equate to being unhealthy all of the time. There are so many prejudices in health care, particularly when it comes to women, that it's hard to imagine any of us actually get the care we need! Overweight people get diseases that are not attributable to their weight but to toxins or genes. Even skinny, healthy people can get cancer or other diseases.

For doctors to "flag" patients for needing care - which they don't get and subsequently need to back to the ER for - is a Dark Ages approach to patients that should be outlawed. What happens is that patients then think, "Whatever you do, don't go see a doctor." Pooh-poohing patients is dangerous and tantamount to harming them.

I know very good doctors who say that you should always seek out help if you don't know whether you're in the midst of an emergency. Sometimes your PCP or a nurse line can help. Sometimes, especially after hours, an urgent care center is enough. But there are times, especially if you have MG, when you can't breathe or move or speak when it's an EMERGENCY because you can't know how quickly MG will get or how bad.

Many other things are factors, such as not having insurance or being very far from a hospital. It's up to each patient to decide for themselves what to do.

Seishin has now, thankfully, been diagnosed with MG (see recent posts). Hopefully, your care, Seishin, will be much more respectful and useful in the future.

Annie
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