Hi folks,

I have a question about ... I don't know what the question is about actually.

Here was what happened. I'm driving my wife to the bus station. Not that it's germane to the situation but her father is on his death bed and she is going to say good bye - germane only in that the trip was unavoidable; I had to go. The bus station is 60 miles away, we don't have air conditioning in our vehicle and it's 94 degrees out (obviously Fahrenheit).

I can't get home without gas, can't buy gas without money, can't get money until I cash this darn cashier's check I have - three stops later (Bank, Walmart, and MoneyTree) and I still don't have it cashed. The heat is too much and I'm getting worse. At my wife's insistence, I pull into the hospital parking lot and she tells me to park.

Here's the crux of the situation and it's happened before when things get really rough: She asks me to park and points to a parking space. I understand the words she is saying, but I can't remember how. Or rather, given enough time, I'll remember everything I need to do but I'm going to need thirty seconds to figure out the dynamics of parking.

"Okay...need to park. I need to stop. Now what? Thinking..."

The wife is still giving me instructions but it's all too fast - I can process everything she's saying in real time, but I can't do it in real time. Everything is slow motion. Suddenly, I remember the brake. Okay good. Ten seconds later I realize that I have to depress the clutch and put the truck into reverse. Ten seconds later I do that. Ten seconds after that I remember that I have to take my foot off the clutch. etc.

And it's no good telling me that I have to remove my foot from the clutch, cause that just interrupts the thinking process and the clock resets. Anyway, the truck gets parked. She tries to help me out but I'm pretty unresponsive. I know she wants me to get out but it's almost like I don't remember how. As I'm thinking about it and trying to remember how, she goes to get a wheelchair. My chin is on my chest and I'm drooling on myself. I know this, it registers, I thin, I need to do something about this...but before I can figure it out, she's back with a wheelchair.

And now I'm shivering. The shivering was new - although the hospital ER staff found no indication of heat stroke. Like I said, the shivering was new but this fog was not. It's happened two or three times now in the last month. Any idea whether it is related to the MG? It only occurs in very hot weather after I've reached a limit.

For what it's worth, they gave me fluids via an IV as I laid there in the ER room - after an hour or so I was ready to leave. After two I was strong enough to do so. I think I was there for three hours total.

Angell, I'm surprised that they didn't keep you there. Did they even check your O2 or do an arterial blood gas?!

MG not only stops muscles from working, but can put the brain to "sleep," too.

Think about being drunk. Or being on anesthesia. MG can cause the general same effect, but from a lack of acetylcholine or "muscle gas." Just as your car was running on empty, you were, too!

That shivering is what I call "MG cold." When MG is bad, your metabolism slows down. In this case, it could also be that your body was trying super hard to cool you off due to heat exhaustion or heat stroke. Hardly matters why, you were too hot and in near a crisis, in my opinion.

Your MG is on the edge right now. You can't push yourself. Is there anyone in your life who can help you? You need to be cool, it's a health necessity. You need to ask your doctor for social worker help. There are many things they can do for you!!!

I wish I could help you more. Please take it easy and don't venture out like that in the heat!!


Annie

Annie, you are beyond awesome!

O2 check as a simple clamp on the finger? If so, then yes, 94%. That along with the rest of vitals (BP and temp) is all the tests they did. ER doctor asked me what I wanted him to do and really, I couldn't tell him. "Well, I guess we can give you fluids... Do you want fluids?" Was the only contact I really got.

Good news - I just got a good sized windfall. That cashiers check was a small portion of it and 'good-sized' means I could live on it for a year if I had to with no other income. We're looking for a small apartment as we speak, with all the comforts of home - you know, like electricity, running water and AC.

I will tell you though, I've got a social worker with the state and have contacted rural resources multiple times. This month I finally (after applying 14 months ago) was accepted for (and received) a $189/month cash allowance that they'll be taking out of my social security award when that comes. Other than that, they've not been able or willing to help. I get a lot of, "I'm sorry, but we've no funds to help."

I'm sure if I die, someone within the agencies with 20/20 hindsight will know what I did wrong, but I haven't been able to make any progress.

Again (and again) I can't tell you how grateful I am for your willingness to inform and help. I have an appointment with my PCP on Wednesday and I'm going to find a way to print this out for him before I go.

Angell, I'm glad to help. We've all been through life, and doctoring, H@!! at some point.

What do YOU want your doctor do for you? Are you kidding?!! Wow. How about thinking. How about a little research before they ask stupid questions.

Here's what s/he could do. The most important thing is to put a patient in the ICU if an MG crisis could be imminent. A lot of doctors still don't do that. You need round the clock monitoring at that point of O2 and ECG.

1. First, assess O2 and supply oxygen (or BiPap/intubation depending upon severity). Adequate ventilation is absolutely the first thing to be done! If you can't breathe (well), you could die. Very few ER doctors walk an MG patient around a few paces with an oximeter on. If your O2 is low while lying down, how is it while moving around? And the pulse tends to go up if your heart is working hard to get you oxygen.

2. Assess overall strength by doing a clinical exam documenting what "strength" your muscles are on their 1-5 muscle strength scale.

3. Do an arterial blood gas (while off of oxygen, because it can skew the results). If it shows "hyperventilation," that does NOT mean the patient is anxious. They can't breathe well and a crisis could be imminent. Pulmonologists, not neurologists, read the results and make recommendations.

4. Hook up an ECG because hypoxemia is particularly hard on the heart (and brain).

5. Do a bedside spirometry or full PFTs in a pulmonology lab (if a patient can tolerate it). O2 and ABG are not necessarily indicative of an impending MG breathing crisis.

6. If breathing is poor (low MIP and MEP, low O2, etc.), assisted breathing might be in order such as a BiPAP.

7. Implement additional therapy if it's determined that the patient is in an MG crisis, or even an exacerbation (the step before a crisis)! It's called "preventative medicine!" The norm is to do plasmapheresis or steroids. It all depends upon how bad you are. Steroids should be a temporary fix with a relatively fast taper (a month).

8. Redo the clinical exam and/or O2/ABG/Bedside spirometry to see if the treatments are working BEFORE they discharge you.

9. Suggest a followup appointment with your neurologist (after they discharge you).

10. Suggest a followup appointment with a pulmonologist to have an overnight oximetry (or do it at the hospital!). Why? O2 readings tend to drop even more while MGers are sleeping!

For heat exhaustion or heat stroke, they should've not only administered fluids, but checked your metabolic panel first AND cooled your body off. Duh.

More than one thing might've been going on here, and a good ER doctor will assess both the possible heat exhaustion and potential MG crisis.

I've attached PDFs below that might help your docs. If they don't have the inclination to do a fast search on an MG crisis, OMG, why are they doctors?

When we can't move or breathe well, how can we take the lead on our own care? You might want to consider bringing a copy of a PDF with you to the ER next time (hopefully, there won't be a next time).

You need to make sure that you are adequately hydrated when you are exposed to hot weather. That' wouldn't necessarily help with MG, but it does cool your body down somewhat. Cool packs on the neck and wrists or a cooling vest helps, too.

I'm glad you had an influx of cash. You really need more assistance, too, though. Work the system and find some (when you feel better!).

Take it easy, okay? You really can't do much more than rest and sleep now. If you had an oximeter, your wife could slip it onto your finger while you're sleeping to see how you're doing.


Annie

http://emedicine.medscape.com/articl...iew#aw2aab6c10

http://www.med.unc.edu/neurology/neu...ences-2007.pdf

Attached Files

	MGCrisisExtubation.pdf (73.1 KB, 120 views)
	NMDiseaseCausingAcuteRespFailure.pdf (120.9 KB, 90 views)
	NonInvasiveVentilation.pdf (76.9 KB, 110 views)