Hi there, It sounds like you got the answer, it's not the best, but it's not the prat dx in the world. I don't know the amassed to why after positive test results we would need an EMG but I too had that and an SFEMG. Both told them what they already knew. After that they did pulmonary tests which they will use to have a baseline going forward. Keep your chin up!

Maureen

Hi happy , have you asked him why he's going to perform the test ? Be proactive as much as possible particularly when something doesn't seem to make sense on the other hand he may have his reasons as to why which I'd be interested to hear his reasoning.

Keep us posted , good luck

Cj

Thanks Maureen, Been following your progress... Best Wishes for recovery/complete remission... Neuro has ordered a pulmonary evaluation to establish baseline functionality. Perfectly reasonable. Have already made appt. with pulmonologist. Unless neuro comes up with a convincing argument pro, I expect I will decline the EMGs, but still not entirely decided yet. HG007

My son was diagnosed in March. His neuro didn't order an EMG. MG was confirmed by Tensolin test and by symptoms and exam. Second opinion didn't order am EMG either. He had a transsternal thymectomy yesterday. Stay strong and gather as much information about this disease as possible.
The neuro said my husband could be a neuro since he studies this disease like it's his job. It helps a lot.

Good luck.

Neuro says the day I drove to ER I was having a Myasthenic crisis. Choking on smallest morsel of morning omelette, coffee coming out of my nose! Weak. Did not experience respiratory distress. Still undiagnosed at that time, waiting for 1st consult with a neuro, per ENT. Admitted, could not swallow ANYTHING during bedside swallow test! Put on nothing by mouth... 2nd day in hosp., attending neuro suggested a test dose of Mestinon before labs came back from Mayo Clinic. Worked!! Thank God!!! Have been on Mestinon since 1st week of May, with very good control of symptoms. Neuro says I have a mild case. Didn't feel mild when food, liquid was coming out of my nose, and I was coughing, and choking until I was blue in the face. HG007

Happy, I don't know what happened with my post but i appear somewhat illiterate.. i swear its my cell phone, which I should avoid at all costs. So,

Basically, you are where I was about February of this year, lots of tests and stuff that are confusing when they are happening but kind of tend to all fall together. I am seeing my neuro on monday and I will ask her what her thinking was on taking a EMG after i was clearly diagnosed several weeks prior via blood test. Maybe at this point there will be some kind of thought process that helps to put together what they are looking at..The tensolin test that Rankin referred to is as far as I know the only 100% accurate test to ensure accurate diagnosis, problem is it carries risk..I declined it a few times along the way as i was navigating neuros for just the right one.

Either way, sounds like you got your Diagnosis, for better or worse and over time you will travel these waters and we will be right there with ya!!

That swallowing thing, yea, that kind of stinks, i have had that and i dont know if I would call that mild cuz it kind of stinks like ALOT ... not stinkiing MILDLY. Glad the mestonin worked that out for you!

Chin up... better days are coming!!!

Cj, Best Wishes from a semi-retired NYC yellow cab driver!! Your posts are always positive, and encouraging... Rankin, Thanks for your input. The love you have for your son shows clearly in your posts. I am not a parent, so I can do no more than imagine what you are going through. I wish you strength. To your son, a complete, and enduring remission of his illness. HG007

hey there....Well as everyone has said it sounds as though you did get the answer but yet not best DX...You are still on the mestinon right and seems to be working which is good..I too dont understand the need for EMG but dont know alot about those but as CJ said keep us posted on if you get one and why the need?? I also agree be proactive, if you think you need another opinion do so..I drive my drs crazy but when I think something doesnt sound right I will check it out even if it means going to another dr for advice....drs think Im a pain but I dont care its my health...So again keep us posted and good luck....

Hi Happy I am no Doc but I suspect he wants to cover his rear for insurance purposes -- and that can be good if you need to apply for disablility in the future. Also the Doc may want to know what muscle groups ar effected and if one group is more effected than another . Just thinking outloud here. Good luck , Charlie

Do you have option of refusing unnecessary tests which could ultimately obfuscate things? I would.

The option to refuse treatments/tests is ours. Can't see how it could be otherwise. If I am not convinced by the neuro's arguments pro testing, I will decline. I can no longer blithely accept Dr.'s orders and feel confident about outcome. 1)Diabetes mismanaged until I did 30 hrs. reading and began to direct my own care... Got better fast. 2)After 2 yrs. of presenting with classic MG symptoms, light bulb never went off in GP's head... Started seeing specialists on my own, and found that my eye closures, and double vision were not due to allergies or too much screen time, nor were my swallowing problems due to GERD. It became clear that I had a neuromuscular problem. It turned out to be MG. If a physician I am seeing does not want to endure my queries, brushes them off, or gives cursory responses, he is in fact self-disqualifying. The, 'concern,' test has been failed. I will find another.

It's typical here to talk about neuro #x. I am on #4. Good luck.

Hate to be a pest, but just one more time.... Can anyone see a clear, and certain value in undergoing EMG, and, or SFEMG tests when the MG dx is already confirmed?? Can't imagine how results of these tests could in any way alter the course of treatment... Again, pos. antibodies, classical symptoms, virtually eliminated by Mestinon. Oh, BTW, as many probably know, the presence of antibodies against voltage-gated calcium channels can be detected in 85% of patients with pos. EMGs for LEMS. Any info as to why these antibodies are not routinely tested for in dxing MG? Will not bug community again about this... HG007