Hi,

I just turned 23 and got a test from my neurology to test for MG. I am awaiting my results but so far i have 0 diagnosis and am terribly ill so anything's possible. I had an EMG and a NCS (which btw, were TERRIBLE TERRIBLE tests) and he said it would test 3 things. Carpel tunnel, thoracic outlet syndrome and nerve flow in general and myasthenia gravis.

I have been dealing with neurological/muscular weakness for 4 years along with fatigue and what seems to be nervous system dysfunction (wired for a few days unable to sleep, and then tired and fatigued for a few days, etc.) The neurological issues started with tingling and crawling sensations in my face and then progressed to weakness when i hold certain positions. It gets worse with exertion. Most recently i had general anesthesia surgery and ever since then i got really sick neurologically and could not walk without my legs shaking trembling etc. I have no idea how it happened and got hit blindside one day.

Currently am housebound and though i just finished up my university studies (barely) i am unable to take care of myself and really left with 0 diagnosis so far.


I would like to know what the symptoms are for MG and if it is only primarily neurological/muscular weakness or if it involves other things like anxiety, blood sugar issues, gluten intolerance, etc. and what the mode of treatment is. I can't deny that i'm scared and waiting my results but regardless of whether i have MG or not, i feel it would serve me best if i knew and kind of braced myself for the possibility of it.

Thank you.

David- Im very sorry to hear of everything your going through, it all sucks, and that time period when you dont actually know what is going on with your body and oyu have doctors running all around you trying to figure it out, makes it even worse.

I am young too, 17 actually, and if you ever want to send me a message and talk, id be more than happy to talk about anything you wanted.

Yet, i completely agree, EMGs, SUCK! Infact I had one today to test my muscle junctions to see how bad they were.

I can only really help with the treatment and symptoms of this horrible disease. So here is goes.

Symptoms: at fist the most common is a droopy eyelid(ptosis) which usually occurs in one of the eyes yet sometimes it can affect both. Most of the time my right eyelid is halfway closed because i dont respond to one of the treatments called mestinon which is a fast acting drug that helps with the receptors.

Further on, people can experience problems such as limb weakness, which in me occured very quickly after noticing the eye, yet nothing really to worry about because its just a bum leg. Yet in some patients it can start affected the breathing, chewing and swallowing muscles. It makes it so that the muscles become so weak that they may possibly stop working, not to scare you. Yet Ive been in the hospital almost with tubes shoved down my throat so that I could breathe, yet they dont like doing that because if that happens then its hard to get your lungs off the intubator.

I know this is alot of information. Yet if you would, could you tell me what muscles you feel weak in? Do you have trouble standing up from sitting in a chair, or get dizzy when walking around?

Have you been hospitalized? Have you tried mestinon?

Also, for treatment, many patients, reluctantly take prednisone. Prednisone is widely used for alot of things, yet in this case its used as an immunosuppresent to suppress the antibodies which are causing the myasthenia symptoms.
There are tons of meds, including cellcept, imuran, etc.

IVIG/Plasmapheresis- These options are used usually when a patient is in crisis, for rapid improvement. It basically takes out alot of the bad antibodies causing your symptoms, though it only lasts about a month.

Thymectomy is always an option, if you do test + for MG, your doctor will most likely talk to you about this. I had it. I had a tumor on my thymus gland which is most likely what caused my MG, and taking it out, can help. yet it was a long recovery process..



hope this information helps.

Great reply, Tyson.

David, Welcome. Tyson knows very well what it's like to be sick so young. It really helps to have someone to talk to.

MG is all and only about muscles that get weak upon exertion or repetitive/sustained activity and relatively better with rest. It doesn't involve "sensations" like numbness or tingling, etc.

Tyson explained the treatments fairly well. I think waiting until you have a diagnosis is a good idea though before you look into them too much. What if you don't have MG? Spend your time trying to relax and take care of yourself!

Depending upon what anesthesia was used and what pain meds, if any, and if you have MG, they could've made it much worse. There are a bunch of drugs that can make MG worse. Morphine, for example, can really make MG worse. If you do have MG, you are going to have to be aware of how certain drugs might possibly make MG worse. It's possible that you do have MG because of that dramatic reaction but only your doctor can say for sure.

I have been hospitalized, as have a lot of MGers at one point or another. The point is to manage your disease with whatever drugs you choose PLUS rest as much as possible so you won't end up there.

Mestinon is a "helper" drug and gives someone with MG more acetylcholine. Well, technically it inhibits the enzyme called acetylcholinesterase whose job it is to "clean up after" acetylcholine. Mestinon inhibits that enzyme from doing it's job so we can keep what acetylcholine we have in our neuromuscular junction longer, thereby using more of it. We have less muscle receptors for that acetylcholine to go into due to the antibodies attacking them.

Anxiety, blood sugar and gluten intolerance don't have anything to do with MG. Well, not primarily!!! Having a disease like MG can cause a person to be anxious. Prednisone, a drug used by people with MG, can cause Pred-induced diabetes. And if you have one autoimmune disease like MG you can have another, like celiac disease (I have celiac).

It is very hard to face the possibility of having a disease. And you're right, being well-informed is absolutely important. Before I was diagnosed, I also went to a neuro-ophthalmologist for an evaluation of my ptosis (toe-sis)/drooping eyelids. That was a very useful appt. for me because he explained what it was, how it works and that it had to be MG because my muscles were fatigable. I have sort of a team approach to my MG, which others may not agree with. I have both a neurologist and a pulmonologist. Why? Because knowing what your baseline breathing tests show and how you may be doing if your MG is worse is a VERY valuable clue. And pulmonologists work with neuros in a hospital setting if an MG patient has a crisis. The pulmys do the arterial blood gases, read them, do breathing tests, evaluate them, etc. So understanding chest wall muscle weakness and how that relates to the disease of MG is essential, in my opinion. My pulmy has standing orders for breathing tests if my MG is tanking.

Since you want to know more, there are three basic emergencies for someone with MG. If you can't take a breath in or out (either). If you can't swallow. If you are overall very weak, whether that happens gradually or suddenly. They are 911 emergencies because MG can go downhill rather rapidly and there's no way to tell if you will or not. The ER is the best place for that. Don't get scared about that, okay? It doesn't always happen for everyone with MG. Again, working with a neurologist - if you have MG - to figure out the "what ifs" and a treatment plan is best.

I hope that answers some questions. If you feel like you could have diabetes or celiac, ask your primary doc for testing. If you are anxious, it could just be situation-related or a more serious anxiety, so see a psychologist or psychiatrist. In the meantime, try to relax and realize that the majority of diseases are manageable!!! I've had mine since birth, it wasn't diagnosed until 2001, 43 years later. And I didn't have a full-out crisis until 2005, when I pushed too hard.

I hope you get results soon.

Annie