[Sadiecl]

I was hoping that some of you could better describe what kind of speaking difficulties you are experiencing. I'm also hoping to hear descriptions of your struggles with walking. Do you experience numbness, or just weakness?
I have had episodes of exhaustion and difficulties breathing for seven years. My doctors and I have always blamed it on asthma, vocal chord dysfunction and "weird pregnancy disorders" but my symptoms did not improve after my children were born.
Recently my symptoms have taken a sudden change for the worst. At initial onset all I could do was lay gasping for air with my eyes closed. Opening my eyes and dealing with the visual stimulus was exhausting in itself, making breahing more difficult. I desperately wanted to sit at the dinner table with my family and tried to walk the few steps to my chair, and I fell. My legs were weak and shaky and my movement was stuttered where sometimes it felt like my legs were delayed in getting the message that they were supposed to move. When I talked my throat felt strained and I stuttered occasionally with the feeling like something had pushed a pause button on my brain. It was also more labored to form the words with tired facial muscles. My symptoms are slowly resolving but I still tire very quickly and have a left leg that drags or stutters. My right leg is somewhat stronger and does not stutter. Has anyone else experienced this?
I have not seen a neurologist yet, but my GP thinks that MG is a likely cause. I have read a lot of posts but still have questions.

[southblues]

It sure sounds like the symptoms to me. I hope you get a diagnosis soon and get the treatment you need.

[Sadiecl]

Yesterday, I had another bad episode. I was again having trouble breathing, sitting in my lazy boy trying to rest so my breathing would ease,but "nature" called and I tried to walk to the lou and got so weak that I slid to the ground. I thought maybe I could crawl the rest of the way but then my arms gave out. I laid plastered to the ground unable to lift my head. I was so weak, i wasnt sure how much longer i could even keep breathing. My kids had to call an ambulance and family members. I laid on the floor waiting, and slowly started feeling a bit of strength return.
When I arrived at the hospital, the doc told me he could easily test for MG but then did a 180 and said they don't do that and I would have to see a neuro. I've already been waiting a week to hear back on a consult from him and will likely be months before I can get in. So, the ER doc ran a million unrelated blood tests and CT's which came back normal(as expected) he came in, informed me everything is normal and I am discharged. A nurse pushed around him and demanded I get up get dressed and go. I reminded her I couldn't walk and so she got me a wheel chair and pushed it up to me, wheels unlocked and stared at me. So getting a bit emotional, I said could you help me or would you like me to fall on my nose? She gave me as little help as possible, shoved discharge papers at me and told me to follow up with my doc in 7-10 days. Back home we were musing at the discharge papers that said to immediately call 911 if you experience difficulty breathing! It is laughable! Except its not funny

[AnnieB3]

I'll writer later, but I wanted to say that not being able to breathe in or out is a medical emergency, worthy of dialing 911! It doesn't matter if you don't have a diagnosis yet. If you can't swallow, can't breathe in or out, or are generally very weak, it's time to make that call!! An MG crisis can happen very quickly and can be life-threatening (not saying that to scare you, but make you aware of it).

So, please, get some help right away. And see a neuro as soon as you can!!!

Annie

Obviously you snuck in that response before mine went through! That treatment at the hospital was ridiculous!!! Did they check your oxygen saturation (both while sitting and walking/stumbling/falling)? Did they do breathing tests? Did they check an arterial blood gas? Did they even do a thorough neurological exam?!!!

This is NOT standard treatment for someone suspected of MG. You are obviously in a very poor condition and need help right away. I can just hear the neuro office saying to go to the hospital if you get worse and the hospital just said to see a neuro first. Your health is being held hostage and you are being used as a medical ping-pong ball (mixed metaphorically speaking).

Do you have an internist? They can run the Acetylcholine antibody panel (ask if they can send it to Mayo). This is seriously bad doctoring!!! I'm really sorry. Do you have someone who can act as your patient advocate and get someone to help you? You cannot expend energy right now. Sleep as much as you can. Don't get overheated because that makes MG much worse.

If you have MG, you could be on the verge of a full blown MG crisis. Call a neuro's office, tell them that you are so bad that you can't breathe or walk, and that the ER didn't do a damn thing for you. AND that you need to get in right away. Go ahead, be dramatic. This is not even funny. But do not get upset if you can because that will make MG worse, too. Right now, anything you do will drain you.

Do you have eyelids that droop (called ptosis/toe-sis)? You can take a photo of them at varying times (i.e., morning and afternoon/evening) to see if there's a difference. What about double vision? Take your pointer finger, put it at arms length from your face, and bring it slowly towards your face. Do you see one or two fingers? If you see two, does it go away when you close one eye? If it does, you could have MG. MG double vision is called binocular and when you close one eye it goes away.

I hope you'll be okay!!!

[Sadiecl]

Thank you for your words of support Annie. I have gained a lot of understanding about MG from your posts. I got into my pulmonologist tody and he says he doesn't think it is MG because my ABG showed low CO2 levels from hyperventilation. He said MG patients show high CO2 because they can't get the air cleared out of the lungs. I thought hyperventilation was also a possible problem in crisis.
The doctor was able to push the neurologist for an appointment next week but he couldn't offer me any treatment because it may mask symptoms and interfere with tests that the neurologist might order. I am dealing with the news bu am discouraged.
For now I am bedridden and if I get that bad again I will go to a different hospital where we have friends with a little pull. My super awesome husband is being allowed to take early lay off from work so he can be home with me and our 8 (yes 8 amazing kids).

[Sadiecl]

Originally Posted by AnnieB3

I'll writer later, but I wanted to say that not being able to breathe in or out is a medical emergency, worthy of dialing 911! It doesn't matter if you don't have a diagnosis yet. If you can't swallow, can't breathe in or out, or are generally very weak, it's time to make that call!! An MG crisis can happen very quickly and can be life-threatening (not saying that to scare you, but make you aware of it).

So, please, get some help right away. And see a neuro as soon as you can!!!

Annie

Obviously you snuck in that response before mine went through! That treatment at the hospital was ridiculous!!! Did they check your oxygen saturation (both while sitting and walking/stumbling/falling)? Did they do breathing tests? Did they check an arterial blood gas? Did they even do a thorough neurological exam?!!!

This is NOT standard treatment for someone suspected of MG. You are obviously in a very poor condition and need help right away. I can just hear the neuro office saying to go to the hospital if you get worse and the hospital just said to see a neuro first. Your health is being held hostage and you are being used as a medical ping-pong ball (mixed metaphorically speaking).

Do you have an internist? They can run the Acetylcholine antibody panel (ask if they can send it to Mayo). This is seriously bad doctoring!!! I'm really sorry. Do you have someone who can act as your patient advocate and get someone to help you? You cannot expend energy right now. Sleep as much as you can. Don't get overheated because that makes MG much worse.

If you have MG, you could be on the verge of a full blown MG crisis. Call a neuro's office, tell them that you are so bad that you can't breathe or walk, and that the ER didn't do a damn thing for you. AND that you need to get in right away. Go ahead, be dramatic. This is not even funny. But do not get upset if you can because that will make MG worse, too. Right now, anything you do will drain you.

Do you have eyelids that droop (called ptosis/toe-sis)? You can take a photo of them at varying times (i.e., morning and afternoon/evening) to see if there's a difference. What about double vision? Take your pointer finger, put it at arms length from your face, and bring it slowly towards your face. Do you see one or two fingers? If you see two, does it go away when you close one eye? If it does, you could have MG. MG double vision is called binocular and when you close one eye it goes away.

I hope you'll be okay!!!

My eyelids are heavy. Maybe a mild droop that makes me look sleepy. I don't have double vision but do sometimes have trouble focusing

The only test that resembled a neuro check was when the ambulance driver called report and said I was alert and oriented. The ER docs nd nurses never laid a finger on me to even listen to my lungs much less check my strength and the only time they had me stand was when I had been discharged and they were trying to get rid of me. The doc claimed that since it was a progressive condition that it was not an emergency and needs to be dealt with through my primary doctor. He also said that Neurology does not come to the ER for anything other than stroke patients which I think is a flat out lie. I worked neuro as a nurse 10 years ago and our neuros were called to the ER all the time.

[AnnieB3]

Well, that doctor is wrong, which isn't surprising. A lot of doctors read a two page spread on MG and think they know about it. MG is more complex than that.

Both hyperventilation and hypoventilation can occur in MG. It all depends upon whether the breathing out or breathing in is worse.

Here is a quote from a book on MG, by MG experts.

“Arterial blood gas measurements are a relatively insensitive measure of impending respiratory decompensation in MG since the initial changes are consistent with hyperventilation and are usually attributed to anxiety. By the time CO2 retention occurs, the respiratory muscles have already begun to decompensate.”

What that statement means is that a patient's chest wall muscles are already FAILING and they are in imminent danger. Duh. Hyperventilation in this case does not mean anxiety; it is a physiological change in a body's metabolism/breathing. Neither does hypoventilation. I'm tired of them doing this "The patient is a weak female and, therefore, is just tired or depressed or anxious or whatever" nonsense.

Sure, a low carbon dioxide can also mean Addison's Disease, so someone should check your adrenal function (cortisol, etc.). It can also mean that you have metabolic acidosis, ketoacidosis, or lactic acidosis. A lactic acid buildup can occur in an MG crisis, too.

http://books.google.com/books?id=6GQ...idosis&f=false

A smart ER doctor will do a clinical exam, run thorough breathing tests (including MIP and MEP), do an arterial blood gas, check oxygen saturation (sitting and walking), and an ECG (because low oxygenation or hypoxemia is hard on the heart).

Is your pulse higher than normal? When the body doesn't have enough oxygen, the heart beats harder in an attempt to get it oxygen, thereby raising the pulse.

You can get an oximeter (I like Nonin's GO2) on Amazon to check your O2 and pulse for yourself.

EIGHT kids?! OMG, you're a saint.

What else can we help with? I really hope you can find an MG expert. If you tell us what area you live in, someone might be able to point one out to you.

You need to bedridden, actually. Stay cool-ish. Sleep and nap a lot.

And no stress.

Annie

[Sadiecl]

My ABG showed Partial Pressure O2 was; 134 (norm range 80-90)
Partial Pressure CO2 was; 24.5 (norm range 35-45)
and my urine was pH of 9 (norm of 5-8) all others were normal
I can't find where they tested my electrolytes to see what my acid base response was. My blood PH was7.576 (norm 7.35-7.45) and there was a note from lab that the "critical result" was read to my nurse but two docs said all my labs were great. Hyperventilating is not an emergency. And No I won't take the advise to breath in a paper bag as one doc friend suggested!

[AnnieB3]

Well, hyperventilating is an emergency if you have MG! Oy. The inability to breathe is an emergency, too.

This is very explicit and will help.

http://glowm.com/lab_text/item/3

Below are some PDFs related to MG. They might be helpful—for the ER docs, too!

Blurry vision can actually be double vision! A neuro-ophthalmologist (not a regular one) can do specific tests that show you have fatigable ocular MG.

A pulmonologist is a great doctor to have on your team. I would highly recommend contacting one to get some breathing tests as soon as you can (if you can manage it!). Don't put yourself at risk, however, just to have some tests.

That's good that you have worked with neuros and know what they do or don't do. That hospital you went to should have a serious evaluation of their procedures!

Annie

I never answered your original question! Weird pregnancy disorders? That's almost funny. I have asthma and it is completely different than MG. Asthma is obstructive and MG is restrictive. Vocal cord dysfunction does not cause fatigable muscle weakness. Where's the critical and scientific thinking?

I can choke (on air when MG is bad), not be able to swallow, have liquids go up instead of down (up to my nose sometimes), dry mouth (lack of acetylcholine causes that), and feel as though my throat is tight (similar to an allergic reaction). BTW, Benadryl does the opposite of Mestinon and might make you worse if you have MG (if you have allergies).

Any skeletal muscle (640 of them) can be affected by MG and become weak. MG is considered a "top and down" disease because it often begins with face/head/neck muscles and progresses downward from there.

[Sadiecl]

This is day 9 since my initial "crisis". I have good times when I can walk and talk for short periods and I have really bad times when I struggle to breathe and my legs barely work at all. We went to a different ER and got the same treatment. When we realized we were going to again be sent home, my husband asked the tech. what would happen if we wouldn't leave after discharge and be said they would call the cops and we would both be escorted out in hand cuffs!
This is about the same time I started having uncontrollable convulsions. It was like having a siezure except I was wide awake. Very painful.(doc said they were caused by the high CO2) Finally after much persuasion and reading off Annie's quote about why hyoerventilation is a crisis, he at least called a neuro for a consult. They gave me mstonin, monitored me awhile and sent me home. I wasn't sure if it helped but my breathing was better a little. The next morning my bulldog husband wheeled me into the neurologists office and told them how I was deterioratin and couldn't wait 5 days for an apt. The receptionist tried twice but docs said they couldn't fit me in. So he turns to the patients waiting and asked if anyone would switch appointments. We were quickly ushered to a back room cuz we were making a scene, but the nurse and "manager" evaluated me and got the doc to see me. She ran a gazillion lab tests and nerve and muscle tests and MRI's. they say it could take 2 weeks to get insurance approval for the MRI so now we wait. The nerve and muscle tests were normal. Starting to think this isn't MG. don't know. At this point I would be happy to be treated for depression/anxiety. I still may not be able to breath, but at least I would be happy about it!