I'm really new to this. I went to the doctor because my eyelid was noticeably drooping. I must say that I think it has always drooped a little, but in the past month it has gotten significantly worse. Even my 7 year old noticed on her own. I have also noticed I've been getting headaches, which could also be because I drink too much coffee. So my doctor told me that he thinks I have MG, and he is referring me to a Neuro-ophthalmologist. I had never heard of it before this week. So I'm just curious, what was your first symptom? I'm worried but skeptical because I don't think I have enough symptoms for this to be what's wrong. There are so many possible symptoms and I only have one. I'm including a picture of eyes taken when it was drooping. Some days it's better than others. Thanks for the help.

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Good morning, Mya. Welcome to the forum! Happy Mom's day, too!

MG can start slowly in some people. Ptosis (toe-sis) or droopy eyelid (or eyebrow) is one of the most obvious, first signs of MG.

The hallmark of MG is fatigable muscle weakness. It means that muscles become weaker with activities and relatively better with rest. MG is unique in this characteristic, which is why it is often easy to spot.

Did you have headaches before after drinking coffee? Chances are that your neck/head muscles are weak as well if you have MG. MG often begins in the head/neck muscles and progresses downward from there. You might notice those muscles cramping up if you laugh for a long period of time.

That was one of my first clues. I was laughing at a meeting and the back of my neck and a bit of my jaw "tensed up" and felt cramped. I had no clue that I had MG at that point.

It's good that you noticed the ptosis! That's what it looks like from your photo.

MGers can have something called "Enhanced Ptosis." You can lift up on the dominantly drooping eyelid for ten seconds. What usually happens is that the eyelid goes up while the other one goes down. They can seesaw like that for a bit.

You could also try to put a cool washcloth on the droopy eyelid to see if it improves. An ice pack is a bit too cold to use! But they call it the Ice Pack test and is used in an ER if they suspect MG. You could always take photos before and after that as well.

In the long-term, extremes of heat and cold can make MG much worse. Now that we're having warmer weather, this is the time to be careful. Being hot (no matter the cause) makes my MG exponentially worse. If you do get overheated, cool down as soon as possible, especially the core muscles (breathing muscles).

In the beginning of MG, muscles can become weaker slowly. So slowly that you might just adapt and not notice it.

Try to keep a journal of any symptoms and when they began. It will help both you and your doctors.

A good neuro-ophthalmologist can thoroughly assess your vision and eyelid muscles. They have visual tests they do that regular ophthalmologists don't. Do you know if you have double vision? More than likely you do because of the one-sided ptosis.

Put your pointer finger out in front of you eyes. Without moving your head (only your eyes), move the pointer finger back and forth in your field of vision, from left to right, slowly. Do you see one or two fingers? If you see two, does it go away after closing one eye? MG double vision (DV) is called binocular, and when you close one eye the DV goes away.

There are many causes of ptosis. You might not have MG. But keeping MG in the mix is important because, if you do have it, it can be life-threatening if not adequately treated or known about. Don't panic over that fact though! Just take it easy until you have a diagnosis and be as informed as you can.

MG is treated with drugs, but managing weakness on a daily basis is equally as important. That would mean not pushing the body to extremes, getting enough sleep, etc.

If you do have more symptoms, such as difficulty swallowing, breathing, or moving around, then go to an ER. MG can progress rapidly as well. Even if you don't have a diagnosis yet, it's best to seek out help in those situations.

I know it's overwhelming to think about being sick, let alone such an odd disease!! But so many of us are just fine. Well, we have a "new normal," even if some days we're so weak that we just want to sleep!

Naps, BTW, are another initial sign of MG. When the body/brain is running low on acetylcholine (which is the neurotransmitter involved in MG), it can make us sleepy or put us to sleep. There are times after running an errand where I have no choice but to sleep.

A drug that is given for MG is called Mestinon (mess-tin-on). It's called a cholinesterase inhibitor (CI). Caffeine is a CI, too. So your body might be craving that coffee for very good reasons!

I hope that info helps. And I hope you can get some answers soon. In the meantime, please take things easy. MG often progresses beyond "ocular MG" into "generalized MG," so don't push yourself!

Annie

AnnieB3,
Thanks for your response. I do crave naps, but I have 2 young kinds and work full time. Therefore I also have exhaustion. The fatigue thing is tricky with me because I don't want to convince myself that I have it now that the diagnosis is in my head (paranoia). I work shift work and have an extremely busy and stressful life. So yes I have fatigue, but I don't know about muscle fatigue. Seems like every "symptom" I've had could easily be explained some other way with the exception of the ptosis. On Friday I was at the mall walking and my knees gave out. I didn't fall, but it was like my legs turned to jello for just a second and I almost fell. I had been walking and/or standing for close to 2 hours though. Yesterday I was walking downstairs in a very tall building with a broken elevator. It was 14 flights. When I got 1 or 2 flights away from the bottom I fell. My legs were just weak. But then again, I had just walked down 12 flights of stairs so I see that as normal. I caught myself with my arms so managed to escape injury. I don't find that my neck hurts but I do hold my head with my hands a lot. My headaches are usually during the day or evening and so after I drink coffee, but I drink it at work in the evening sometimes too. They even seem more like dizziness at times. Since none of these other symptoms stand out as really odd too me, I feel like I can really say I have is the eyelid drooping.

I can say that you might also have denial!

I literally dismissed my symptoms since birth until age 41. I always adapted to them. I've had MG since birth but only diagnosed at 41. I became worse during my B12 deficiency. A person needs B12 to make acetylcholine.

You probably want to have a primary doctor check your B12 level and thyroid, if that hasn't already been done. Also your vitamin D level, since that's a common deficiency.

Weakness that fluctuates like what you are describing is classic MG. What concerns me is that you are dismissing the symptoms, such as holding your head in your hands. Classic MG. We're always trying to prop up something.

When I was working a temp job in 1998, I had to walk down two flights of stairs. I nearly fell as well. MG becomes worse with repetitive (stairs) or sustained (constant contraction) activity. Were you better with rest after walking down the stairs?

That's how you need to think of MG. Do I get worse with an activity and then better after I rest?

People with normal muscle strength would not become weak as MGers do. Healthy people would call walking down stairs exercise!

Jell-O is exactly how any of us with MG would describe legs after doing too much. Some days, when I'm weak all over, it feels as though I'm walking through quicksand. I eat slower than others do. There are so many examples (please chime in here, everyone!) of MG.

No one wants MG. And trying to solve a medical problem does not mean one is paranoid!!! You need to listen to your body and your instincts, so that you don't end up in what's called a "myasthenic crisis." Don't let that scare you, but we can get so weak that we can't move, swallow, breathe, etc. If you ever have any one of those symptoms, you NEED to dial 911. It doesn't matter if you don't have a diagnosis!

I hope you don't have MG. But my instincts are feeling as though you do. Why? FATIGABLE muscle weakness!

Are you set up to see a neuro-ophthalmologist? A MG expert neurologist? If not, please get that set soon! Or say where you live and someone might be able to recommend one for you. Geez, someone could at least have the AChR (acetylcholine receptor) antibody and the MuSK antibody blood tests done!

Don't kid yourself, okay? This can be a serious disease.

Annie

My initial symptom that I noticed was drooping eye lids. I had taken an out of town trip of about 75 miles and was fine driving on Friday. When Sunday rolled around, I couldn't hold my eyelids open to see to drive! It was a bright sunny day, so I stopped and bought sun-glasses thinking it was just a sun glare problem. Didn't help. I ended up having to stop about every 15 minutes and rest with my eyes shut in order to get home! I didn't know what was wrong and it took me about 6 months to get a diagnosis and by that time, I could hardly see, walk, sit, eat, breathe, etc. Looking back, I probably had mg for about 5 years before my actual diagnosis, but that weekend was definitely when I became aware I had a real problem!

Good luck!

I am going to start keeping track of anything that could be related so I can tell the doctor. I see the Neuro-ophthalmologist at the end of this week so hopefully he can find out what's going on. When I look at the ptosis pictures associated with MG I must say that it hits home. I'm also convinced that my headaches are related because I cut back on coffee and it made no difference. I also get blurry vision at times which has to be related to the ptosis. So yes considering these things, I can see where the leg issues could be related too and I will certainly tell the doctor. It is a lot to take in when you go from never even hearing of Myasthenia Gravis to possible having it. It certainly makes you think about those "occurrences" that you thought were just nothing before. I will let you know what happens! A

Just an update. The doctor ordered blood work to test for MG. I go back in a couple of weeks for the results.

I had a single droopy eye for a long time that got droopier when I was tired. My legs would go out from under me when I'd get almost down the stairs going to my back yard.
Getting off the zero turn mower and stepping off onto the ground, I fell on my face on several occasions.
Chalked it all up to old age, out of shape, etc.
Eventually diagnosed with LEMS.

I noticed the folds in my eyelids were different.. I noticed after getting out of a hot shower and attempting to put on eye shadow..I had just had a baby, so i too, thought i was just tired.. and then it got worse, so i thought, well maybe thyroid eye issues (that's common with post partum after all)... then after showers I was having trouble even standing up afterwards.. carrying my kids.. finally holding silverware, flipping switches, breathing.. and my face looked awful (like skin melting off of my skull- the pics still freak me out)! Good times

I was diagnosed with mg 18 months ago and are currently on mestinon. However this is about my daughter. She has always been a really ill child getting every cough and cold going turning into chest infections has always been very fatigued and unable to walk far, she has been treated for asthma for the last 10 years taking steroid inhalers and is 15 years old now. I noticed about a year ago that her right eye droops early evening. Took her to Drs and asked her to have some blood tests done for myasthenia. She got referred to a paediatric consultant who did lots of blood tests. The achr blood test came back positive for myasthenia the consultant said she definitely has it and she was referred to a paediatric neurologist. 5 months later she was seen the neurologist didn't have her notes didn't listen to her problems or symptoms wanted photo of her droopy eye etc and said she was only borderline and didn't want to give her any medication. The next sentence she said that a blood test of 5 or above is a positive blood test and hers was 7 and mine was 5 I definitely have it. I came out very confused and feeling very let down really. Basically the neurologist wasn't interested in her symptoms of severe fatigue, always been ill, finding school exhausting, achy joints, muscle twitching, double vision, finding it hard to hold arms up at school to answer questions, arms ache when brushing hair etc. She has been unable to have a normal childhood like my other children due to her severe fatigue when she isn't at school all she wants to do is rest!! Any advice as what to do next please! Basically because she could walk and talk normally the neurologist was not interested and didn't listen to anything. Any advice as to what to do next would be appreciated