Hi,

I started having double vision approximately a week and a half ago. They've ruled out stroke, MS and have decided that it's either MG (myasthenia gravis) or possibly a weak muscle. My neuro-opthamologist thinks that it's MG even though my initial blood tests were negative. I've got a temporary prism in place to help with the double vision and I'm scheduled for a nerve conduction study next week to diagnosis if it is MG or not.

Has anyone else ever had the initial blood work for MG come back negative and actually ended up with a positive dx? Also, has anyone ever had it spread from having double vision to issues with other muscles in their body? I'm new to all this so I appreciate any feedback.

Thanks!

Hi, and welcome. I hope you get some answers soon. I have some statistics for you that I hope will give you a better feeling for what you're up against.

People with ocular myasthenia have negative blood tests more than people with generalized (whole-body) myasthenia do. Here's one link that says that only 70% of people with ocular myasthenia have positive blood tests:
http://myasthenia.puhs.org/drspector_ocularmg.html .

I have generalized myasthenia, and have tested negative for the AChR antibodies three times (and negative for MuSK and LEMS antibodies once each). I finally got diagnosed by a Single Fiber EMG.

About 50% of people who start with ocular myasthenia end up with generalized myasthenia: http://www.ncbi.nlm.nih.gov/pubmed/12580710

Don't be discouraged by the tough stories you read here. I think that people who have the disease well under control, or in remission, naturally drift away from forums like this, simply because MG isn't such a big part of their lives any more. So you might get the wrong impression from us--we're the ones who are struggling. And feel free to ask questions. We're so grateful for what we've learned from each other, and for the support we've gotten, that we're eager to help in any way we can.

Abby

Hi, im going on 39 yrs with generalized mg now, onset at 14 yrs old and i never get tired of learning new info about mg and others newly with yet i hope i give positive feed back to see that we can take on the days with it even if some are more challening then other days - some days are yahoo's some are boohoo's this site gives great feed back and good answers ,i frist had the double vision at 14 i dont recall blood test givien to me i know i had to go get a brain scan they thought i had a tumor( then went and got glasses to see if it corrected the double vision nope just see 4 x's now, the nuero had me do vison test on a board with these markers to see how far i would see form side to side with a patch on one eye and in 1974 they did not do the needle above the eye brow- i dont even know whats that called , i acutally forgot what they gave me but it made my eye lid rise up and then they said yep mg, then 2 yrs later i got thymectamy, i do get prism in my glasses now and it helps a lot, , and at times it is scarey to read what people are going thru especially if one is not going thru that but all we can do is be as posoitve as we can going thru it and help others and let them know nobodyy is alone..

Welcome to forum n8s!

Well said, Abby!

Welcome
My first blood test was neg but my neuro-opt said never fear it will soom become positive and he was correct.
Abby said it best for all of us. Just be aware you are not alone.
Mike

I've had two negative blood tests anti AchR and MUSK, but they are still sure of my diagnosis as am I. Good luck and I learn a lot here!

Hi, N8SWife. Welcome.

MG rarely stays ocular. There have been studies that show even in those patients who doctors "think" have only ocular MG, both a SFEMG and muscle biopsies of other muscles have been positive for MG.

Do you have any other symptoms that you have or haven't noticed? It's sort of funny but a person can become weaker slowly and not notice the difference until they do something like exercise or walk up a bunch of stairs.

How is your breathing? Any weak muscles around the head area? MG is known as a "head and down" disease. Like Guillain-Barre often goes the opposite way, feet and up. Weird, eh?

It might help to write down any symptoms, even small ones. Really pay attention to how you feel when you do things. Look at your face in the morning (or take photos) and then again after you do something or at the end of the day. When I'm bad, my entire face droops, like I need a facelift.

MG is manageable, if you have it. There has to be a lot of common sense in order to deal with it, which involves alternating activity with rest. And drugs.

Sometimes the antibody tests are not positive right away. They (Mayo) often recommend redoing the test in six months. Have you had the MuSK done?

I hope you get answers soon. It sounds like you have good doctors who are trying to rule other things out. It's hard to be patient while getting diagnosed. You want to be absolutely certain you have MG before you get drugs thrown at you. Why? Because if you are on drugs, like immunosuppressants, and then they doubt your diagnosis, they may want you to go off of them to retest you!

Good luck and keep asking questions.

Annie