[scarpettafan]

Hi, I have some questions about blood tests for MG.

I have been going to my opthamologist quite a bit lately about double vision (really kind of seeing a shadow just slightly behind the image) and blurriness.

I have had prisms in my glasses for about two years now. In August of '08 (when I resumed teaching) I noticed that I was once again seeing double and have blurry vision. I finally got back into the Dr. in January and she changed my RX. The problems got better until about May when it started again. I again returned to the Dr. who decided to have me try these temporary prisms.

At that time the Dr. decided to run the achr test which came back elevated. The lab suggested two other tests which were also blood tests. They came back negative. The Dr. said that the "jury is still out on whether I have MG or not."

I do not know what these other two tests were and I do not know at this time if I have MG or not. Can you help me understand what this means?

[AnnieB3]

Hi, and welcome. The first test usually run is the Acetylcholine Receptor Binding Antibody. It is the one that is most positive in people with MG. You can have MG and not have the other two - modulating and blocking - be positive. Those were probably the other two that were run. And these antibody tests can fluctuate. A couple months from now, or if you get worse, blocking antibodies might show positive.

The fact that you had a positive MG antibody test means that you need to go see a neurologist for further testing. An ophthalmologist, while it's good that he ran the test, is not the doctor who can diagnose MG!

There are other tests that can be done like a repetitive nerve stimulation test and a Single Fiber EMG. And they can rerun the antibody tests and send them off to somewhere like Mayo to be done.

Did this eye doctor say if you have fatigable ptosis? Otherwise known as droopy eyelids. Your eyebrows or face in general can droop too.

MG is all about muscle weakness that gets worse upon exertion and better with rest (relatively). If you have droopy eyelids, try putting a cold washcloth on one of them for a minute and see if it gets better. If it does, that's a pretty good sign you have MG. But you have to see a neuro to be diagnosed!!! And get treatment.

www.myasthenia.org is a good website.

Does that answer your questions, at least for now? If you say where you live, someone here might be able to recommend a good neuro in your area.

I hope you get help soon.

Annie

[scarpettafan]

Annie,

Thanks for the reply.

I will be seeing my neurologist (the one I see for migraines) on July 2. I was planning on discussing this with him at that time. However, at my last appt., my opthamologist mentioned possibly referring me to a neuro-opthamologist at KU Med who specializes in MG. I plan on pursuing both opportunities.

So, from what I understand from your answer, I did have a positive achr test. I do not know what the modulating and blocking antibodies are. Can you explain that to me?

I do not have ptosis at this time unless I do and I just haven't noticed it yet. But, what I do have a problem with is extreme eye fatigue. As a teacher, literature and history, I was unable to read for any extended period of time during the last few months of the year. The students took over most of the reading that needed to take place.

When I rest my eyes my vision will clear for a little while. Now that school is out I will lay down with an ice pack on my eyes which helps tremendously.

I live in Kansas City and am planning on requesting a referral to Dr. Tom Whittaker (spelling of last name is iffy) at KU.

Thank you,
Shannon

[Joanmarie63]

With your double vision do you tend to lean your head one way or the other so you can read better? I don't have droopy eye lids but do have the double vision or I should say I see one and a half Working in a school is hard {I know} so you really need to be DX'ed and have treatment started before school starts back up, and remember heat is your enemy so always try to stay as cool as you can. Good luck and please keep us updated, the people on this site are wonderful and they let you rant too when you need to. Remember we all know how you feel and what you are going through.

[scarpettafan]

I do tend to lean to the left to read. I don't know why I just do. Also, at this point, I can read better with my glasses off than on.

My eyes got very heavy earlier today and I did take note that my left eye seemed to droop more than the right. I decided to put an ice pack on it and within seconds the eye was no longer as droopy. I guess that is probably a definitive indicator or MG?

Because of the extreme eye fatigue as well as Grave's Disease, fibromyalgia, and chronic fatigue I am not returning to school in the fall. I have decided to take a year sabbatical in order to try and figure out what is going on with my body.

Thanks for the replies.

[erinhermes]

Hello and welcome to the BEST site on the net for MG!

I am still a "newbie" to MG myslef, but you DO sound like you hve classic MG symptoms - as for the eye test, I was the exact same way! My neuro gave me his diet coke to put on my eyes and voila'! My eyes opened up almost IMMEDIATELY!

Now whenever my eyes are tired, I put my ice pack on them for a while and it really helps!

Whatever you do, try and stay out of the heat! It will really make you exhausted if you are in it too long. Also, when you are tired, REST! You cannot push through MG - it will only make it worse - learned that h hard way!

When you have the time and energy, I'd love to hear more about you - you symptoms, meds, etc.......

Hang in there!
Erin

Originally Posted by scarpettafan

I do tend to lean to the left to read. I don't know why I just do. Also, at this point, I can read better with my glasses off than on.

My eyes got very heavy earlier today and I did take note that my left eye seemed to droop more than the right. I decided to put an ice pack on it and within seconds the eye was no longer as droopy. I guess that is probably a definitive indicator or MG?

Because of the extreme eye fatigue as well as Grave's Disease, fibromyalgia, and chronic fatigue I am not returning to school in the fall. I have decided to take a year sabbatical in order to try and figure out what is going on with my body.

Thanks for the replies.

[scarpettafan]

I do my best to stay out of the heat but mainly because when I am overheated I break out in hives.

How does the heat affect MG?

[AnnieB3]

When you close one eye, does the blurriness and double vision go away? In MG, the muscles around the eyes get weak to varying degrees. When muscles are weak, the focus of the eyes is different. One eye can be completely different from the other. But when you close one eye, voila, you have good vision. That is typical of MG, called binocular vision.

Each of the acetylcholine antibodies do different things to damage the neuromuscular junction. There was a past post that had good info about this. The fact that you had positive binding antibodies basically means you have MG. Sometimes those antibodies can pop up in a few other conditions but if you have a clinical presentation that looks like MG and antibodies, chances are you have MG.

This is a great website.

http://neuromuscular.wustl.edu/

I explained the MG/heat thing in your other post.

I understand you wanting to go to your ophthalmologist, because you probably trust him. But he is still not the appropriate doctor to help you. You need a full-fledged neurologist, preferably a NICE MG expert. Dr. Barohn is very good. If your ophthalmologist can refer you on, that's great!

http://www2.kumc.edu/neurology/barohn.html

I hope you can get diagnosed. Just be as nice as you can to your docs! I know that sounds stupid but neurologists tend to not be the nicest of doctors. Good luck.

Annie

Thanks, Abasaki for the thanks.

[ras1256]

Wow Shannon, you do sound pretty classic, darn it. I just have one thing to add. While your migraine neuro may be really good for migraines, it really is best to find someone that does work with MG a lot. Vascular neuro's keep up with their field, and neuro's that deal more with MG and other neuro muscular conditions keep up with that field. Neuro world is just to big for anyone to keep up with all the body can come up with.

Best of luck to you. You have quite a full plate!

[maryec]

Annie
Thank you for that blood info !
Becky
What great insight !
Mary