Confused
 

Over a month ago my eyelid drooped for about a week. I went from Dr. to Dr. until here I sit with a "Understanding Myasthenia Gravis" brochure on my desk. My Neurologist says I have MG.

I feel fine. Vision fine. Eyelid fine.

No meds... come back in three months. Chest cat scan in the meantime. They'll call me with a time.

After reading the brochure...

Should I have mentioned I've been building miles because there is a half marathon coming up I want to run in? Should I have mentioned I walk four to six miles on a regular basis?

I did mention a surgery I have coming up and he said a local was fine.. If they want to do a general I should have the Dr. him before- what's that about?

confused
 

Sam,
It sounds like you are extremely overwhelmed with all the info right now and that is totally understandable. We all go through that when first diagnosed. I can only speak from my own experience but once my eye started drooping it never got any better until I started prednisone. I know there are several people on this forum who have never had any eye involvement at all. You say you aren't having any other symptoms and feel fine. That is great just pay close attention to things that before may not have seemed important but now may be such as tiring easier than before, arms and legs feeling weak or shaky after exertion, or a big one for me was anytime I lifted my arms above my head I noticed how tired my arms had gotten. I don't want to be the bearer of bad news but when I was first diagnosed my eye was the only symptom I thought I had and then as I did more research and talked with people here learned that my arms being tired and wearing out easier were MG related. I also continued to get worse for several months while trying to find a medication that worked for me. I hope that will not be the case with you but just keep your eyes open for new symptoms. As for the Dr. wanting to talk to the surgeon before surgery if you have a general that is so he can make sure he is aware of the MG. It can cause some problems with breathing during surgery if you aren't watched closely. Hang in there and welcome to the group. Please keep us posted.
Kendra

Sam,

Kendra's advice is wise--it's good to be on the look-out for new symptoms. But there's also hope that you may never have them. 15% of people with MG only have ocular symptoms. See http://www.myasthenia.org/docs/MGFA_Brochure_Ocular.pdf (a brochure from the Myasthenia Gravis Foundation of America).

Abby

Sam, Hi and welcome.

Do you know why your doctor said you have MG? Did he run some MG antibody tests? Do you have copies? Did he do an EMG?

What's funny about eye muscles and double vision is that unless a neuro-ophthalmologist or neurologist points it out to you, you might have it and not even know it. It might be worth your while to see a neuro-ophthalmologist. They are specialized and can do tests that show fatigable eye muscle weakness.

I am a little concerned. If you have MG, and it has been confirmed with the right tests, then you should have had a discussion about your medication options. Waiting a MONTH to talk about it has the possibility for being dangerous for you. If you have a worsening of any symptoms that "feel" like muscle weakness, such as shortness of breath or difficulty swallowing, call your doctor. If it's really bad, you need to go in either to the doctor or the ER.

MG is all about muscle weakness. I don't know what brochure you got, so I may be repeating info. It gets worse upon repetitive or sustained activities, like running! ;) It can get worse with surgery. You need to inform the doctors doing the surgery, like Kendra said, days BEFORE that your neuro has said you have MG. Certain drugs can make MG worse. A local may or may not be "fine." Any drug that sedates has a potential for making MG worse. Lots of other drugs too.

Was your only symptom a transient eyelid droop? Have you checked your eyelids later in the day? Try taking a photo of your face in the morning when you are well-rested and then later in the day. Sometimes you can't "see" the difference but photos will often reveal it.

They are doing a chest CT because sometimes people with MG have a thymoma, a tumor of the thymus gland. It's fairly rare. Some people have "hyperplasia" or an enlarged thymus gland. If they are doing contrast with the CT scan, Iodine is relatively contraindicated in MG. So is Benadryl, the drug they often give before giving Iodine! :cool:

I think you need to call your neuro and ask a lot more questions. It's pretty odd to have a neuro throw a diagnosis like this one at a patient and not discuss it more. Did they do a differential diagnosis? Did they look for any nerve palsies or anything in the brain that might've caused the drooping? Thyroid condition? Anything?

I hope you can get answers. Don't freak out! MG is manageable. There's a lot to know about it. Once you get a firm diagnosis, then we'll overwhelm you! These guys are a great source of support, as you've noticed already.

Annie

Welcome Sam!

I don't know what tests you have had (if any). My neuro dx'd MG...and then did the tests to confirm. At the time my symptoms were irritating (to me), but very mild - like yours.

A CT scan, lung function tests, EMG, MRI brain and spine...frankly, I thought it was overkill for my complaint. Now that I know a bit more, I understand the tests (in my case they needed to rule out MS, vasculitis, etc.).

I would encourage you to read about MG and talk to folks here and to your doc. There are many 'degrees' of MG - it differs from one person to another...or from one day (or sometimes by the hour) to another for the same person. For me, sometimes I can string two 'good' days together before I'm exhausted!

Above all, listen to your body. If you're tired - rest. If your legs feel like jello - don't panic....rest. Then tell your neuro!

Good luck with your half marathon - - just don't push too hard until you have a good idea about what's going on.

Sue

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!!!

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.

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.)

Too funny, Jana. I needed to laugh, thanks. Not at your expense, however, Sam!! ;)

I got asthma a month after I started Mestinon. I had "bronchial hypersensitivity" diagnosed a year earlier. And sometimes I cough right after I take my dose.

None of us want MG. And it rarely stays "benign." I don't know why, but with guys it can often flare rapidly. Like with Tyson. We just don't want you to crash and not be prepared, Sam. And most neuros will at least have their newly diagnosed MG patients "try" a small dose, like 15 - 30 mg. of Mestinon, to see if it makes any kind of difference. Sometimes with MG, you can get so weak so slowly that you can't even tell you are weak. Like how I was right before my MG crisis and got to stay in the hospital for a week . . .

Annie