Greetings!

It appears that I may be a new member to this elite group in the next couple of weeks.

Last week Tuesday, I noticed a droopy eyelid, double-vision, fatigue, and a change in my face. Within a week I met with my optometrist, my physician, and a neurologist. I've had a Brain MRI, thyroid blood test, and blood tested for both the MG antibodies. Brain MRI and thyroid tests appear to be fine. Results are not in yet for the antibodies but next week I have an EMG and CT Chest scheduled. The Neurologist I met with mentioned MG and ordered all the tests to make sure of the diagnosis.

I've been reading all there is to read about Myasthenia Gravis. Is there something else I should be doing while I wait for all the tests to happen? I'm fortunate that my hospital has a few folks that treat MG. I just hope that I can get in to see someone and begin treatment.

Thanks for this forum....the information is invaluable.

Hi, and welcome. I just want to say that if the blood test comes back negative, don't assume you don't have MG. It's pretty common to get a false negative, especially in the early stages of the disease.

Abby

Oh, you "almost" lucky girl!

Well, Greetings to you too, and welcome! I'm new to this forum as well. I have to say that I have mixed feelings. Part of me wants you to have a diagnosis as quickly as possible. The other part of me is hopeful that you are merely allergic to anchovies! It appears that your health providers are very thorough, and extra kudos your neurologist in all of this for "thinking" MG.

Waiting for tests can be difficult, so pull up a chair. I'd hand you a coffee but the technology isn't quite there yet.

Cheers...

I was just diagnosed 10 days ago. It was a battle and took too long. I finally had to take matters into my own hands. (Read my posts). I am on mestinon and prednisone and am doing better. I am still waiting for antibody tests now. My emg was neg but my tensilon test was super positive. Hang in and keep pushing forward. You know your body best
This group has been a godsend to me. Welcome
Sandy

Wow, "a few" doctors that treat MG. Please be sure that the doctor that you choose to see the most has more than one or two MG patients. The very best you can do is to get one who specializes exclusively in MG, next best is a neuromuscular specialist.

It's great that your testing is moving along so swiftly, most people do not have that kind of experience. The people here are wonderful, you'll get lots of support and info.

Hi, Crayolagal. Does that mean you like drawing with crayons? Welcome to the forum.

I thought it was funny when you asked what you should be doing while waiting because, if you have MG, you shouldn't do much. I think staying stress-free would be helpful.

Did they do the MuSK antibody test too? Probably not since it costs more and they usually wait to see if the ACh (acetylcholine) antibody is positive first.

If you do start to get progressively weaker, to the point of not being able to swallow, breathe or move well, then it is time to get to that hospital. Try to stay coolish and don't go out in the heat. Extremes of heat and cold can make MG much worse. Most of my exacerbations and my MG crisis were in the summer months.

If you get diagnosed with MG, there is a lot to know. For example, there are some drugs that are relatively contraindicated in MG and some that should not be taken at all (i.e., Ketek, an antibiotic).

I hope you get answers soon. It's not fun facing down the possibility of a disease but MG is manageable. Let us know how it goes!

Annie

Welcome. I hope your docs kick you out of this elite club, but if they don't, you will be OK. I'm newly diagnosed and still getting used to the idea of having a chronic disease. It's especially tough when the disease is rare and has a wide spectrum of severity. There's a lot of information out there. Most of it will never apply to you. MG affects different people very differently. It's very hard to not worry. Whatever you read, it's likely your symptoms will not be nearly as severe.

Good luck to us all.

Thank you for the warm welcome and support! It looks like I've come to the right place

Yes, I'm a girl who enjoys crayons - hence the name.

The neurologist just happened to have a cancellation the day that my referral was received. Thankfully, that is how I was able to see her so quickly. Unfortunately, her specialty is Parkinsons and she will be referring me to one of the other neurologists who have experience with MG.

I have my CT and EMG scheduled for Wednesday and hopefully I can get back in to a neuro sometime in early June to find out the results of the tests.

At this point, I am taking it one day at a time and I am trying not to let stress or fear of the unknown get the best of me. It is easier said than done but I look forward to learning more from all of you.

Annie said, "... there are some drugs that are relatively contraindicated in MG and some that should not be taken at all (i.e., Ketek, ..."

I've been looking for this post for five minutes! I'm going to have to invent some kind of "on paper program" so I won't get lost...

There are plenty of drugs we can take, putting MG on the backburner--this is not one of them. Annie, thank you for mentioning this!

Health Canada, one of the toughest agencies in the world, and the FDA, say NO to Ketek for myasthenics.

Dr. James Howard was the neurologist instrumental in working with the FDA to make sure Ketek had a black box warning on it. I know someone who had drug-induced MG from it and she doesn't have MG.

Crayolagal, I hope you can relax and not get too stressed over the diagnostic process. That's really good that the neuro thought a specialist would be the best one to see you! If they do contrast with the CT, you should know that Iodine can affect MG. Good luck with the tests!