When I went to the opthamologist he said he was 90% sure of his diagnosis of MG., but wanted to order the antibodies blood test to confirm it., now after I am reading all of these posts., I see that that is not a diagnosis necessarily., I go back Wednesday for my results., what questions should I ask., or what other tests should I demand if these are negative., sure I just ask to be referred to a neuro who specializes in this?
I am so confused with my vision getting as bad as it does at times., I just want to know what I have and be able to deal with it the best I can., but it seems the medical world wants to put so many people thru more distress with the neuros that I have read in these posts just not wanting to diagnose for insurance reasons or arrogance or whatever. What a terrible thing for people to have to go thru who already suffering.
Well I am a fighter and I will.... do what I need to do, and whatever happens Wednesday., someone, somewhere will determine what it is exactly happening to my vision, and muscle spasms and weakness., I know easier said then done. It is just heart wrenching hearing some of your stories., you are already having such diffilulties and then to have to have it made worse by all people Doctors. Well please any questions you feel will be helpful for me to ask my Opthamologist when I go back for my results will be helpful.
Thanks to all of you , with all your answers to my questions and being up front with everything. Thanks, Nancy

Hi Nancy, sorry you are having problems...there may be better answers from the more experienced ppl here, but here's my .02 cents....whether the antibody tests are positive or not, you should have an EMG done by a neurologist who is familiar with MG....many have had negative blood tests, but positive EMGs....& there are sev'l AB tests, including the MUSK test which may be more definitive....I'm sure your Opthamologist is right & he is certainly on the right track to get you a dx....he may know a good neuro guy/gal to go to....wish you the best of luck...get back to us with update, & ask more questions......

Dottie

Morning Nancy,
If your blood work comes back negative, but the Opt had reason to suspect MG, I would certainly be looking for a good neuromuscular neuro referral. There are seronegative Mg'ers, and I am one. All that means to me is that they havent' discovered all the antibodies that may be involved. The MUsK antibody was just discovered less than 10 years ago I believe. Prior to it's discovery, there were approx 50% seronegative MGers. Now that number has been cut to, I think, about 20-25%. So the blood tests are not the definitive.

In defense of the docs (you don't hear this from to me too often , but in all fairness...) there are soooo many neuro conditions that can have overlapping or unclear etiologies. Unfortunately, there is no one single test can dx any specific one that I know of. They all have to come from a combination of sx, and test. In the case of MG, the presentation, clinical exam (strength tests), and either positive antibodies or EMG's showing decrement will bring about the dx. If a neuro doesn't suggest the EMG's, request one. A single fiber EMG is the most sensitive, but has to been performed by a very skilled technician. Most will do the regular EMG first. The RNS (repetetive nerve stim) will show a decrement in muscle response that is classic for MG.

For this test, they will "shock" a nerve set in multiple quick succession, rest then exercise the muscle for a minute, repeat the shock, excercise and repeat again. They measure how well the muscle responds to the nerve at each interval. It's not real painful, just uncomfortable.

It's important they do more than one set of muscles - usually they have done the wrist area, shoulder area and face on me. My wrist showed minimal decrement, but my shoulder showed 76% and my face showed 23% on the test that I was dx'd with.

VERY IMPORTANT: Annie dug up some info about EMGs not being affective if you smoke for 24 hrs or have caffein for 3hrs prior to the test. I have had 3 EMG's and the only one that showed the decrement was the one when I was hospitalized and hadn't had a smoke within 24 hours and hadn't had my morning coffee prior to the test. Don't ask your neuro to confirm this, because they haven't figured it out yet for tests on the peripheral nerves like this one. They seem to think it's just on tests on the central nerves. Just trust us on this one, ok? It'll make your test more accurate.

Also, I believe it's Erin that suggests taking pictures of yourself when your eyes droop or face misbehaves . When your vision is screwing up, check the mirror or ask someone if you are drooping, then get a good picture of it. Unfortunately, we have all discovered that if the neuro doesn't see it, it's not real. And these symptoms are notorious for pulling a disappearing act come time for the appointment . So anything concrete you have that can document the condition will help you get it through to them that you're not making it up. I've even found that my husband confirming what I say isn't enough often, so "word of mouth" doesn't work - I guess they figure that's mass hysteria or something .

Hopefully, those with more eye type symptoms will hop on and give you their pearls of wisdom as well. I'm sure they will.

Best of Luck getting a fast dx! The vision thing, although it doesn't affect me as often or severly as many (I'm generalized MG), sucks! At least you were wise enough to join the forum early on, and should be able to benefit from our mistakes and tips.

Let us know how it goes.

Becky