My symptoms first started with my speech followed very quickly by my legs. When the neurologist was first diagnosing me he kept doing tests with my eyes and never had an issue. My eyes were the last symptom that has developed and only really affects me when I'm watching tv or reading and already tired. People do tell me my left eye lids droops, usually when I'm tired. I didn't have to wait as long as you to get diagnosed. My symptoms started in 12/07 and I was diagnosed in 5/08.

My daughter's first symptom was arm weakness during volleyball practice and, then, some slurred speech in the evenings. (She was diagnosed with the first set of blood tests that the neurologist did. He thought it was a brain tumor but ran the blood work to satisfy me. She is highly antibody positive.) Eye dropping didn't come until later. Good luck. Sarah

My Mg also started in my legs when I was 30years old my eye lids escaped until now when Mg came back after 8 years in remission. It was very similar could not walk etc.
This time my symptoms where so different that I did not realize what was happening. Mg changes from hour to hour and day to day and month to month. but there is always hope God bless

Mine also started in my legs then arms, ..... the eyes were the last symptom.

Mine started in my legs also on a bike ride my legs felt wierd so i got off the bike and fell to the ground and it took a few seconds before i could get up (scary). nothing with my eyes..(just a little change in my vision the past 2 years but i thought it was just from being on the computer all day at work??)when taking the mestinon 1/2 a pill a day i get it in the arms and hands and that makes work tough when i type all day!!

Mine started in the arms, couldn't lift arms above head for more than 30 seconds. Then travelled to my legs. Last of all it got to my eyes, I have 24/7 double vision. Got diagnosed quickly but when changed Endos she told me that it was ALL in the eyes. I like you don't understand as I had arm issues for years and the last symptom was the eyes. I also thought the eyes were the first to go and when I questioned the Endo she said the same???? so here I am with double vision, arms that can't go above my head, weakness in my hands and legs but apparently I just have occular mg - go figure!

hiya i first started to notice the same kind of symptons in my legs in the year 2007 i visited my gp were they told me it was a problem with my knee and i needed physio, so i jus left it and it got worse were i started to notice loss in my arms whcih became very diffuclt for getting upstairs as i have no strength in all my body, then i started to notice my face had become different i could nt smile and my eyes were always rolling. it was when i collapsed again my husband took my to see a specialist who performed an elg test this was when i was dianosed with mg.
I was very scared at first but am getting used to the idea its very hard as am only 21 and was diagnosed when i was 20 so my whole life has changed i cant do as many things as people my age can do. but reading ur note mine was the same my legs people say normally mg starts in the face specialy the eyes and when i visit the neurologist shes always checking my face doing little test and my breathing which still makes me confussed as i am suffering pain in my legs.
have u been told about a thymecotomy as part treatment for your mg?

Kelsari- Hi! I'm Sarah and I have a 15 yr old daughter who was diagnosed at 13 w/ generalized MG. Her first symptoms were arm weakness and slurred speech. (From reading on this site, it seems the more serious form of MG doesn't start out in the eyes.) Your neuro tests your breathing because weakness of the lung muscles indicates your MG is very severe. My daughter's neuro tests all her muscles and reflexes several times in a row to see how they all perform under fatigue (including the eyelid, tongue etc.) Fatigue, not muscle weakness, is my daughter's chief complaint. Removal of her thymus gland helped halt the progression of the disease and allowed a little recovery but did not put her into remission. Everyone, including the docs, are trying to keep her off the steroids and immunosuppressants due to her age. The state (thru the appeals process) has ordered the insurance co. to pay for IVIg without requiring trial of any of the drugs due to her age. She has had IVIg once and it did help. She takes a high dose of mestinon, a bunch of drugs to counteract the side effects of the mestinon, and birth control pills for the hormonal fluctuations. It's tough but she does "ok". Good luck.

My symptoms started in the arms and legs first, then I noticed slurred speech. The rest of my specialists say that I cannot possibly have MG because I do not look like an MG patient even though the blood tests were highly positive. People used to try and help me up when my legs would go, but now I tell them that I cannot help them, just dead weight and to let me rest. My eyes are not droopy, but I get the prisms and the double vision when I'm very tired or when it is time to take another mestinon. I don't have to have a watch to know when it is time to take it. I will also get tremors so bad in my hands that I cannot hold anything. My husband really freaked out when he saw that one. Don't know why all the falling down didn't freak him out first. I am headed to Duke in September and they are supposed to be the number one for MG in the nation, I just hope that I get help there and not the scratching of the head that I get from my own neuro.

Hi MJD,
I'm also new to the group. My symptoms also started in my legs. Right after I graduated high school I started to notice that I was "out of shape", which I attributed to ending my athletic career. I tried to get back into shape by rollerblading and kept falling every time I hit a small bump. I had great difficulty going up the stairs when I started college and felt like such a whimp using the elevator to go up to the second floor.

I have only had very minor eye problems over the last 13 years, although I do have problems with my arms and hands now, too. At first Mestinon seemed like a miracle cure, but the effects quickly leveled off. I had a thymectomy a few months after my diagnosis, but I was one of the unlucky ones who didn't get much relief from major surgery.

I wish you luck. You are not alone. There is a great variety of experiences with MG symptoms, and few people are "textbook."

Yes very much so, I fall all the time or at least 2 months ago I was, turns out My walgreens down here gave me out of date mastinon and it didnt help I feel out side and had to have stiches in my knee, I was just dianosed recently and I have had weakness for a good while thinking all thisweakness was just me being lazy, other wise my lids nope I cant say Ive had that yet, this is a list of my symptoms thus far
weakness in low half of my body also feeling off balence,no feeling at all in my feet, cramps in my legs,hard to chew food and swollow my food, weakness grasping, loss of bladder at times, head aches in the back of my eye area, sensitivity to light makes these head aches worse, foogyness like I took cold medicine all day, zombie like state at night,cant get out of bed by myself because I dont have the strenth, some times my husband says that I start talking like im drunk, and I dont drink, my legs give out on me offten, but mind you I take mastinon 60mgs 4 times a day and some of these symtoms have decreesed a bit not much but a little

Just FYI- after much convincing, the docs raised my (103 lb) daughter to 90/mg 4x/day and her fatigue and muscle weakness improved some. If mestinon shows some effect, maybe try a little more?

My hubby has severe MG--crisis, legs, pneumonia, eyes, swallowing, chest muscles--everything. Had thymectomy on June 9. His symptoms have not improved. Mestinon doesn't seem to help him. I know it is early in the game, but I worry he'll be in this state forever--miserable and fatigued beyond belief. He shouldn't take prednisone--he is bipolar.

MG wife,
So sorry that your husband is still feeling weakness. He is lucky to such a caring and interested partner that can be his advocate. MG not affects the person who has it but those around them.
Is mestinon his only med? There are other options besides prednisone such as cellcept, imuron, along with rounds of plasmapheresis or IVIG.
Talk to your neuro about these options. You might want to google each drug and procedure before speaking with his neuro.
It does take a while to get your strength back after a crisis and thymectomy as both are big shocks to your body.
Good luck,
sherry

My dad and I are two more for this list. Both of us were undiagnosed until we developed the eye findings.

Any more of us here or reading this post with diagnosed or suspected MG and late or no eye findings? We can let our docs know that there are others like us.
b.