waiting to get in for testing and bloodwork. Wednesday when I first woke up my right eye kept closing itself, I thought I was just tired. But then all day I kept noticing it trying to fall closed. Have had eye troubles (muscle problems, double vision, blurry vision, etc, ) for a while, along with long term fibromyalgia, chronic fatigue, etc.

But this latest eye trouble, leading up to Wednesday, comes after a massive car accident two years ago. lots of injuries, including broken sternum (the lots of little crunches kind, right where seatbelt crosses middle of chest, not a single clean break). Lots of continuing problems from this accident. Lots of physical and mental stress.

Because of increasing eye problems, including now this eyelid thing, I cannot do much internet researching, so I thought I'd ask here, where people have more experience and info.

Could getting smashed to hell and back be a trigger for MG? Sternum injury right over the thymus? (as well as broken rib, clavicle, etc) Stress?

Or is my rotten luck just as good as ever?

Also wondering--I find I have days where I frequently swallow, just my saliva, wrong and end up choking as it tries to go down the wrong pipe. Days where it feels like my face is in an unwanted frown, I was thinking it was tightly drawn down, but now I wonder if it is sagging instead. the "weird breathing thing" where I just sort of forget to keep breathing if reclining at certain angles (but not all) or lay flat, and have to consciously breathe, or change position. And I get short of breath over almost nothing some days. Of course, after 2 years of trying to heal from multiple injuries, I am indeed in lousy shape, but it just seems I can't make any headway. Does any of this fit with MG also?

my ophthalmologist had me try the "ice test" and it helped, until I warmed up again. so now I'm waiting for the local neurology group to get me in for testing (scheduled at the end of the month). But in the meantime, I can't help but wonder about this, and what might have triggered it, and what symptoms I should remember to tell the doc when I finally get there, and what to not bother with because it would just cloud the situation.

Hi Winic. Welcome to the forum.

I think it's good that your are going to be evealuated by neuro. Just tell them what's been going on like you did here. Neuro's usually like to put the pieces together themselves! But be sure to note the 'frowny face" and the shortness of breath.

As to whether or not your accident 'triggered' MG or an MG-like reaction....
Many of us here wonder if there was some contributing factor...and except for the folks who have hyperplasia of or actual thymoma...most never can make a 'for sure' determination.

I hope you like the neuro and get the info you need from him/her. Pls let us know how it goes.

already know the neuro for several years (for migraines, dizziness). thought she was one of the few decent doctors in this area, but recently discovered no, not-so-much. have no faith in pretty much any doctor anymore, except the ophthalmologists. But since I can no longer drive, and it's 30 min to nearest train or bus to get elsewhere, I am stuck with the local yokels.

Found it best to bring them the info they need (have even had to give them the link to info on what testing to do for other things at times) because if they don't know or aren't sure, they will just pass me off to one of the other doctors: Dr. X says, "What does Dr. Y say?" I answer, "Dr. Y said 'Hmmmm, what does Dr. X say" and Dr. X says "Hmmmm, maybe you should ask Dr. Y...." Cross your arms in front of you, pointing in opposite directions, say Not me, not me....that's all the doctors I've got up here.

Communicate with neuro via their email system. Told her what ophthalmologist said. Also asked if she would add Lyme disease test to bloodwork, our area is full of ticks and lyme, and I hate needles, so lets do it all at once. She emailed back, yes, will order MG workup and add Lyme test, too. Her assistant calls me later in day to schedule EMG and says she is mailing bloodwork sheet to me, but when I ask, there is no lyme on it, and dr just left for vacation for two weeks. EMG is at end of month. then we communicate by email again, because I don't have an appointment with her again until May, and she doesn't have any openings sooner.

So I have plenty of time to figure it all out myself, as usual. SO not thrilled to have yet another problem, yet at least this one would be an easy one compared to the rest, believe it or not.

Hi, Winic1. Welcome. To answer your question, yes, MG can come on after trauma or stress or surgery or anything else that might stress out the immune system. Doctors can't "prove" that in any specific case but there are studies that show that.

Don't give up on your doctors. You'll find that when doctors are out of their league, they can get defensive. And some don't like to think outside of their own little specialties.

With such bad breathing, can you get to a pulmonologist right away? If you have MG, breathing can get really bad. A pulmy can really help figure out the type of breathing problem you have and do specific tests like MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) to see if you have breathing which is fatigable (like in MG).

I'm concerned about some of your descriptions of weakness. If you get so bad that you can't swallow, breathe in and/or out well or can't move, you need to go to the ER. And I mean dial 911. Don't drive. MG can get really bad quickly and there's no way to predict how quickly that will happen. It doesn't matter if you have a diagnosis or not. It's an emergency.

I know it's frustrating being sick and not knowing yet what's going on. It may be more than one thing too. You might want to check some other basics like thyroid, vitamin B12 and vitamin D.

Doctors aren't perfect. Try to cut them a break. You don't know me but given my past experiences with them, that's really saying something. If you can find a way to work the problem instead of beating up on each other, it will really help! But if you can't work things out with a doctor, it's quite reasonable to get a 2nd opinion or get another one.

I hope you get answer soon. Please don't overdo it, in case you do have MG. MG will push back and make you much worse!

Annie

Been to a pulmonologist. Immediately sent me for a sleep test to see if I had sleep apnea. Nope. But he did say they saw the slow shallow breathing thing. But he can't explain it, and had no interest in it. I did manage to do all the breathing tests, eventually. No kidding, I told you I CAN breathe, I just sometimes don't. did you see all the test runs, or only the best one? He said they only report the best one. He said something about, well, you could have apnea, but not sleep apnea, so, bye. So when I don't naturally breathe right, I consciously breathe right. When I'm short of breath, I sit back down and wait for it to catch up. It's been this way since the accident two years ago. I'm used to it. It's not scary anymore. If it ever feels different so that it is scary, then I will know it's time to call for help.

after repeated requests for them to send the pulmonologist reports to a couple of my other doctors, as I had put down on the initial paperwork when I went in, I had to fill out an official records requisition with the hospital and wait for them to be shipped out of storage, for some reason they got sent away right away without being entered into the electronic system or being sent to anyone. Have asked (through the email system) the neuro if she got them, she's not answering.

My physiatrist keeps saying she never got anything from anyone (other doctors, my pt) despite them saying they got the electronic signature back from her when they sent it. It's a black hole over at that one. Last visit, despite lots of serious problems, she had me stand on my orthotics to check them, even tho she did that just a couple visits before. And did the "what did the other doc say?" thing. And chewed me out for not putting on the gown and taking off all other clothing, even tho all she looked at were my feet and ankles. Okay, yah.....but she writes the PT orders, so I smile and nod.

My neurologist is providing me with sympathy, and that's all, so far. Since test did not show something that my body has EVERY symptom of, she was glad there was no evidence of it. Fine, so then what is it? Nope, just getting sympathy, oh, of course I'm having the symptoms. Must be so frustrating. I feel for you. That's it. So you can see why I have little faith in her. And I had thought she was better than that, could not believe it when that message came through. So I accomodate and try to be wary of triggering all of those problems, and sit down and wait for them to clear when they do happen.

My gp? Well, if I think I have strept throat or some other infection, I will go to him. Not for anything else, why bother. As soon as the easy thing is done (been having ear pain, think it's from the tos pulling on my neck muscles, but please check to make sure it's not an infection that I could actually do something about) he picks up his laptop and backs out the door while we're still talking. And, worst thing is, I only switched to him last summer after going in for a meet and greet and laying out all my complications, and asking him if he didn't think he could or wanted to deal with me, please let me know now and I would keep looking for a new doc. He said he would take me on. SOB!

And on and on and on. This is a very bad area to be hurt or sick in. Nobody talks to each other, they tell me to carry the messages between them, then they don't listen or they don't believe it, and tell me to carry a message back. Even the ophthalmologist, who called me about my call in to him about the eye thing, told me to get a pen because I needed the neuro to order two tests, and rattled them off at me (acetylcholinesterase blah blah blah, good thing I have a background in the hard sciences). I asked him to send her the message, and he sounded surprised, and said okay, and actually did. He's the only one who has, or would, around here.

I am going to give them a break. I'm not going near them unless absolutely necessary (like to get my PT renewed), and then I'll just smile and nod and pay my copay, and stay away for as long as I can. It's not like they do me any good, anyway. This is a very bad area to have anything wrong with you.

But I have read the descriptions of MG going bad, and know you gotta call for an ambulance if that happens. I don't drive more than the mile and a half to my daughter's school anymore, and not happily. What treatment I will get when I get to the hospital....well, keep your fingers crossed for me. Scarier than the thought of needing to go to that hospital is the thought of being there.

Winic, where do you live? I know it's frustrating, but we have to remember that only about 600 new cases of MG are diagnosed in the US each year - unless you can find a doctor who likes to "find zebras", it can be hard to find one who is knowledgeable about MG and its many presentations.

While you're getting bloodwork done, you may want to ask for a Celiac Disease screen - these AutoImmune disorders travel in packs.....

If you had a "positive" reaction to the icepack test, it's a pretty good bet that you are looking at MG - the "positivity/predicatability" percentages for that particular screen are quite high.

Many of us had negative results come back on the standard MG tests, but were still diagnosed with MG. It's almost a diagnosis by process of elimination for people who test negative.

It is difficult - when you are so tired - to try and get answers. Believe me, all of us on here understand what you are talking about!

I'm in the Northeast, 60 miles from New York City, 50 from Hartford, 45 or so from New Haven, 140 from Boston.

You'd think there would be decent medical care here. Near as I can figure, and everyone else I know around here laughs and agrees, is we got all the doctors who wanted to but couldn't get into the big centers in NY and Yale and Boston. The rejects.

I am a zebra in every way going. Not just a zebra, a Grevy's zebra. and even then a rare mutant rainbow-colored half albino Grevy's zebra.

so if I have MG, it will just be the icing on the cake. and probably the easiest thing I have to deal with. because at least it has a real name and some real treatments to try.

but I bet this latest eye thing comes up idiopathic. again. so they won't treat.

or, as I've taken to calling everything new, "idiot's path", which is the route to any of these doctors.

sorry for the really bad attitude. any use of my eyes within arm's reach is giving me a migraine for the last couple of weeks. which makes both life and my attitude suck.

What is the icepack test??

Winic1, You're just being honest. I'm sorry you don't have as good of care as you need. You might need to travel at some point to get that. You're WORTH getting better care. And even not so great doctors can follow the orders from other doctors who diagnose things.

Have you written out everything? Tried to put things in categories and then think about what specialist(s) you should see? Probably, right?

KimmyF, the ice pack test is when doctors put an ice pack on your eyelids that are drooping. A temporary improvement will occur if a patient has MG. It can occur in a few other disease but not usually such a dramatic improvement.

believe it or not, these docs cannot follow orders from better docs elsewhere, nor are they capable of contacting them for clarity (just had hubby take a day off of work to get me into NY city back to vascular specialist for the thoracic outlet syndrome, because nobody up here could find the info he sent after his initial letter, nor could they (so they claimed) get through to him to ask for more info. I did, and I'm just a plain ol' person). Nor are they capable of talking to each other, they tell me to tell the other this or that, no email, phone, nothing. It's mind boggling.

Have a whole collection of typed up sheets I hand out as necessary, everything from lists of medicines I'm on and medicines I cannot take (if one in 10,000 people have trouble with a med, it will be me) to a summary listing of symptoms and problems to the two page listing of current and former doctors from the last two years since the accident. It's kind of funny when the intake person starts asking the usual questions and I just keep pulling out another complete printed sheet for them, the facial expression becomes priceless. Funniest part is, they always insist they will make copies and give them back to me, takes a bunch of arguing that I can just print more (have they really not heard of home computers, printers, etc?) to get them to just TAKE them. Guess they're not used to experienced patients. I've just had it with filling out the same info over and over and over and over....

So I will wait the month to get in for the testing, still waiting for the bloodwork orders that were supposedly mailed to me last week, no rush to get to that, either. (I hate needles. Like, stressed out semi-panic at the thought, since I evidently have very tiny veins and it usually involves some digging around.)

It either is, or it isn't. Will either be diagnose-able, or not. Problem will either get better, stay the same, or get worse. Whatever. Not like getting all uptight about it is going to help. Just wondering if this will be something else to blame the guy who clobbered us for, or if the universe just felt the need to play yet another twisted joke on me.