[restorativepose]

I am the new friend who recently posted my first entry here about 'going thru the mg dx process'. Since you're all so helpful, I wanted to ask another question to ears that will hear what I'm saying.

Leading up to March 2012 was the period of months where I'd been pushing myself and going to the gym repeatedly, even though the workouts were terrible and left me feeling worse than ever.

During March, our family was on vacation and I'd gone out for a hike, alone. The hike was planned for a few miles, but after 15 minutes of flat walking and sudden aggressive leg weakness, I headed back to the car. As I left the hiking trail, I noticed my chest was hurting (left side top) and my left arm was hurting too.

(**Note: Many years prior I'd had panic attacks so I know what those are. I was thinking far too rationally for it to be that in this case.)

By the time I got to the hotel room, I had broken out into a cold full-body sweat. I wasn't panicking, but instead observing this attack of the strangest symptoms ever. I felt nauseous and out of breath.

My mother in law insisted on taking me to the local ER, where they did an EKG and chest x-ray. They found nothing of note, but the ER doc called my symptoms "exertional". I can tell you that they did give me a nytroglycerine, and after that it felt like my entire body breathed a big sigh of relief.

My question is, is there anything on that ER visit that would have indicated a myasthenic crisis? They did blood work and that too was normal. The whole thing was definitely an event I do not wish to repeat!

[AnnieB3]

Hi. Do you happen to have a more informal name? Welcome to the forum.

The first thing you need to know about MG is that "push" is not something you should ever do. EVER. MG pushes back, as you clearly found out.

Yes, it sounds like you were in an MG crisis. That's very dangerous and requires a 911 call immediately. You don't know how fast you will go downhill.

What they usually do for someone with an MG crisis is, well, first get them on oxygen! It sounded like you had a low oxygen and that's why you had chest and arm pain. You CAN have a stroke or heart attack if your oxygenation is too low! Did they even slap an oximeter on your finger? That's almost standard procedure now in ER's and clinics, even if you don't have MG. So they failed big time.

They will usually do a clinical exam of your muscles to designate how weak you are (i.e., 2/5 on the clinical exam scale is pretty weak). They often do arterial blood gases to see how much carbon dioxide is building up in your body due to low oxygenation and poor breathing. They should do breathing tests but that depends upon how bad you are doing. If you can't breathe well at all, breathing tests are pointless and silly!

So, they should've done 1. An oximeter reading and 2. A bedside spirometry or peak flow meter and 3. An arterial blood gas. A neurological clinical exam should've been done too!

Depending upon the hospital, they will either try IV Solu-Medrol or plasmapheresis. Again, this can be different depending upon the treatment you're already on (none, in your case in March). Some patients do better with IVIG.

I know, all of this is knew and I'm throwing a lot at you! You really need to get yourself a pulmonologist ASAP, along with the neurologist you already have. They work together in a hospital when an MG patient goes into a crisis. Hopefully, you won't have that happen again.

With MG, the more you do, the relatively weaker you get. You "use up" the muscle gas all of us need to keep our muscles strong more quickly than normal people do. That "gas" is called Acetylcholine/ACh (ah-seat-ill-co-lean). Antibodies attack the area where the nerves and muscles come together, known as the neuromuscular junction. Due to that, not enough ACh gets to our muscles and they get weak.

And heat is your #1 enemy. It can make MG exponentially worse. Not only heat from the summer months but heat from exertion, infection, sitting in your car without A/C, etc.

Panic attacks, as I'm sure you know, don't cause a drop in O2 levels! So that's a very easy way to differentiate what's going on. I have a Nonin oximeter and it is invaluable! They have less expensive ones on Amazon.

Who would want to repeat an MG crisis? They're absolutely scary. I've had one and I've done everything since to avoid having another. That ER did not do their job well. Make sure the hospital nearest your home knows what they're doing ahead of time, just in case you do get weaker at some point. Ask your neuro where he practices.

I hope that answers some questions. There's a big learning curve with MG, so keep asking. Your life will change. No more long hikes! Especially not without a cell phone. Take it easy.

Annie

[teresakoch]

If the ER didn't "know" to test for MG, they wouldn't have ordered a test for it - they are only "technically" there to deal with the problems any given patient is having when they are admitted to the ER. Since only around 600 people in the US are diagnosed with MG in any given year, it's not something that would routinely be included in an ER bloodwork panel.

Until you get a firm diagnosis, you might want to make sure that you have a "buddy" with you if you go on any more hikes (I would advise "no more hikes", but that's up to you!). You DEFINITELY do not want to go into the water without someone keeping a close eye on you at all times - if your muscles give out on you while swimming, you won't be able to keep from going underwater (that's been the hardest thing for me to adjust to - I LOVE being in the water).

If you ARE diagnosed with MG, you will definitely want to get a Medical Alert bracelet of some sort - if you go into a crisis, you may not be able to talk. There are several medications that are absolutely contraindicated for people with MG, but if medical personnel don't know that you have MG, you could be given one of those medications by mistake.

Take it easy - whether you have MG or not, it's obvious that you are having problems upon exertion; trying to push yourself is going to make things worse, not better. It's hard for those around us to understand this - we've been told the "opposite" for years - but you're going to have to insist on being allowed to rest.

I felt bad for my husband when I first got diagnosed, because this wasn't what he "signed up" for. But he has been great - he doesn't want anything bad to happen to me, so he keeps a close eye on me. At the beginning, he didn't understand how just the tiniest amount of exertion could make me so tired, but as time has gone on, we've both learned what living with this disease means. He's my biggest champion now.

I feel really bad because he works all day, then has to come home and do "my" jobs as well (our kids are grown). I try my best not to be a burden, but he always tells me that he loves me and not to worry about it - he just wants to have me with him.

I don't know what I did to deserve him, but I'm thankful for him every day....

[teresakoch]

One other thing that you might find is helpful is a reclining chair of some sort - the more we "pamper" our muscles, the better. A reclining chair allows you to take stress off of your skeletal muscles.

We've even taken to carrying a lightweight rocking chair (like for camping) in the car for me - I find a comfortable angle, put something under my feet, and I am able to hang out with people for a while.

You never realize how many muscles are required to hold your body in an upright position until you have a disease like MG - I've had to quit going to church because I get tired FROM SITTING (pathetic, huh? - but that's MG for ya).

Of course, that's the "good" thing about getting an MG diagnosis - you have an "excuse" for why you feel so tired, and you can allow yourself to take it easy. It's hard at first, but with time you learn to feel less guilty about it....

[restorativepose]

These are all wonderful responses. Thank you!

As for my name, it's the name I've always used in forums, so I guess I like it. It comes from a gentle type of yoga pose... one that doesn't strain you but instead puts you into a place of comfort and peace.

Your responses have shed new light on the whole ER visit. I just couldn't figure out what happened. But the more I learn about MG, and the more Ive learned from tests recently, all points seem to indicate possible MG.

This coming Friday I have an appt with with a doc who I'm hoping will become my GP. I haven't had a general practitioner for many years (other than OB for childbirth, etc), so hoping this doc can help me along the way.

Someone mentioned their husband in a PP. I have felt the same way about my husband adn the extra duties he's had to do. He and I both work outside the home full time, he is a teacher (summers off!) and I'm in corporate America. My little boys are ages 3 and 6. They have been adapting to having mama snuggle with them instead of playing wild like we used to.

Off to meet the family for boating. Supposed to be hot here today (90) so am taking new precautions and coming back home to A/C before it gets hot. I've learned (finally realized?) heat is not good for me!

Blessings and hugs,
rest.