My sister has one eyelid drop almost every time she has a migraine -- this is not all that unusual for migraine sufferers, according to her neurologist. Did you know that it is possible to have a migraine WITHOUT having your head hurt?

Not saying that your doc is wrong..........but, I'm really hoping that you don't have MG!!

Thanks for the responses!

I am “overwhelmed”…

I have had a little warning that I probably had MG. When my eyelid drooped I went to my eye doctor… who sent me to an Ophthalmologist – who was fairly certain I had MG, ordered blood work and made an appointment with a Neurologist… who after doing an exam and reviewing the blood work told me I had MG. But… he didn’t participate with my insurance program. Up until that point I was out of pocket for all my expenses.

Once I realized this wasn’t just an “eye problem” I made an appointment with my primary care doctor, who I hadn’t been to in 10 years, and started over. He ordered new blood work, then made an appointment with another Neurologist. The new Neurologist, after doing an exam and looking at the new blood work, diagnosed me with MG. So.. so far I have had a Ophthalmologist and two Neurologists tell me I have MG.

The primary care doctor ordered all kinds of blood work, I have twelve pages of results. In answer to the post asking if I had the results – I do.

Sorry, Sam. So, you are most likely AChR antibody positive. Good news -- you have "proof" that you HAVE MG -- if/when you develop more significant symptoms down the road, this might/should help you get more satisfactory treatment from medical professionals. Also, AChR MG is probably the best understood and, generally speaking, the most responsive to treatment. That being said, I have AChR and am now on full disability -- was able to work for one full year after diagnosis -- then, CRASH, BOOM!!! But, I am unable to tolerate the conventional treatments -- you could be JUST fine -- and do EXACTLY what the textbooks say -- live a somewhat "normal" life.

Sam, The reason I asked if you had more than a "clinical" diagnosis and have had the tests done is because some doctors are not experts at MG. MG is a clinical diagnosis backed up with tests but without the tests being done, a doctor can't be certain that a patient has MG. I didn't want to "assume" that you had tests done. It would actually be useful to have an EMG or Single Fiber EMG. Most MG experts will not give a final diagnosis of MG without either those or a repetitive nerve stimulation test being done. Why? Because they need to "see" what the muscles/neuromuscular junction are doing.

This is an overwhelming disease at first. You do need to know about the "what ifs" because MG can be okay or it can get bad, as these guys have said. I think the most important thing you need to know about MG is that if you push it, it will push back. Meaning, if you do too much, MG can get much worse. And it can get worse exponentially, like earthquakes.

You might want to write down a bunch of questions for your neurologist. The first one being: If I have MG, why didn't you at least give me Mestinon?! Mestinon treats the symptoms of MG, not the autoimmune process. It can give you more of the "muscle gas" called Acetylcholine (ah-seat-ill-co-lean) that people with MG lack.

I'm not trying to be condescending or anything by giving you a lot of info. There's a lot to learn when you have MG. It's hard to get your head around the fact that you have a disease let alone all that comes with it.

I hope you will call your neuro if your symptoms get worse. Take it easy.

Annie

(ah-seat-ill-co-lean) -- Annie, THANKS!!! I wanted to know how to pronounce this!!!

That's how most definitions have it, Jana, but I actually prefer: Ah-set-ill-co-lean. It should be called "Unsetylcholine" or "Upsetylcholine" for how it unsettles our lives and upsets us!

Annie,

Thr Dr. gave me his number and if I have any problems I can call 24/7 and will get a return call from someone in the practice.

If I don't have any obvious symptoms why would I go onto Mestinon? Yes my left eye droops after staring up for a couple of minutes. But no droop is noticable in the eyelid right now, no double vision....

I've been pushing my body really hard lately.. Again I want to get ready for a half marathon. I don't think anything is out of sorts except what is normal for trying to get my body back into some sort of shape... rather than round.


"You might want to write down a bunch of questions for your neurologist. The first one being: If I have MG, why didn't you at least give me Mestinon?! Mestinon treats the symptoms of MG, not the autoimmune process. It can give you more of the "muscle gas" called Acetylcholine (ah-seat-ill-co-lean) that people with MG lack."

Sam

Hi, Sam. I'm glad you don't have any obvious symptoms now. But what if you rapidly get worse? If it were me, I would like to have at least one drug for the disease I've been diagnosed with on hand "just in case." Like after you run that half marathon. What if that is the trigger that kicks your MG into high gear? Your body gets heated up during exercise and heat makes MG much worse. Just be careful. Some MGers have gone into crisis, where they can't breathe well or speak, and they could not tell someone what was going on! At least carry a small "medic alert card" in your wallet/back pocket saying that you have MG and the name/number of your neurologist. What else is usually on a card like that is an emergency contact (like family), insurance information, drugs you are taking, past surgeries, other doctors, etc. Just write some stuff on a piece of paper. You can laminate it too, getting laminate from an office store, in case it gets wet and no one can read it!

I hope the marathon goes well.

Annie

Annie, Sam is like I was at first (way back in 2005) -- floating down the River "de Nile". Why did I need Mestinon? I just couldn't whistle. Whistling wasn't all that important anyway!! AND, I had asthma -- the drug info said that asthma and Mestinon sometimes don't "play well together". So, it took a week or so for me to get my nerve up to even try the darned stuff. But, when I did -- WOW! I had some fatigue that I had not even been aware of -- and the Mesty made it better.

I agree that just HAVING some Mestinon "in hand" would be good -- I'd rather HAVE it and NOT need it -- than NEED it and NOT have it! (My profound statement of the day -- before brain fog TOTALLY consumes me.)

Sam- I want to tell you, i think were very close to the same on the MG level. I went to my opthamologist, saying i had a droopy eye, she then thought i had mg, sent me to a great neuro, - yet not a mg expert, who i know see at duke- and the blood tests came back negative, and yet my neuro still wanted another test to diagnose, and i had a SFMG, (single fiber muscle test) and it came back positive. I also was very active before all this happened, and to this day im still having a hard time not excersizing. But, let your doctor know that you are going to do that, and see what he says.

Also, im with Annie- You need someone who knows more about MG.

Are you feeling weakness in any other muscles throughout your body? I didnt have any other symptoms really until after my surgery, I had my thymus removed, and hopefully, it puts me into remission.

But just be careful and dont over do it, because when I did, PLURAL, i ended up in the hospital. 4 Times.

Just keep yourself at ease with it all, and make sure that you dont over do it.