Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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art-chick 07/08/2010

Just had my first SFEMG and I cannot believe it was normal. He tested 5 different muscles!! But considering I just had 5 days of IVIG, am on 50 mg of prednisone and I could only hold the mestinon for 12 hours, I suppose I shouldn't be surprised. So now I'm seronegative and have no objective tests still. This is so frustrating.

Tomorrow I am scheduled for breathing tests w/ and w/o mestinon to check diaphragm strength and I am praying that will prove something---anything at this point.

I was supposed to have a CT on Monday but thanks to catnap they are going to either cancel the contrast or do an MRI for the thymus instead. But not because it's contraindicated in MG but because I had hives for a week after my CTA chest and they think I may be allergic to iodine and the last thing I need is more drama. . .

My thymus better be huge or I am going to have to get a muscle biopsy next.

Hang in there with me all you seronegatives!! They are still totally certain I have MG. It's just SO difficult to get to. . .

deleted_user 07/08/2010

Are you sure you had the Single Fiber EMG (SFEMG)? This test is done with a very thick needle right above your eyebrow. They measure tic's. It is only done in specialty places. I had to drive 5 hours to get mine done at Duke, but it was worth the drive. I don't know how reliable those Achr's are anyway. I had one high positive and the next was negative. I don't know if I'm classified as seronegative or not. I was threatened with a muscle biopsy also (rheumy still wants it done) but I'm glad I got the SFEMG and halted the dx process. I'm sorry that you are walking down that same path full of thorns and huge bumps. Hope you reach the end very soon (the testing and stuff). Testing can be very stressful and then we get to feel worse. Sending you all the positive energy I can, Kim

deleted_user 07/08/2010

My heart goes out you. I am in the same boat as you and it is very frustrating. Thus far I am also seronegative and my standard EMG was normal. I'v also had a chest x-ray that showed no abnormalities. And despite the fact that my symptoms are clinically MG, my neuro will not give me MG diagnosis. At least your doctors are convinced that it is MG! I'm not so sure why an MG diagnosis is so difficult get, but you are not alone!!

catnap2 07/09/2010

Hey artchick, I'm so sorry to hear the SFEMG was negative. Sounds funny but I think we all understand, when something is wrong we need an answer. I'm glad you will be avoiding the iodine contrast, it's not good. I had a muscle biopsy in March and can give you an idea what's coming if that happens. Mine was done on my anterior thigh and was, of course, negative for any abnormalities.
Cathi

deleted_user 07/09/2010

I am also seronegative with normal emg's, thymus, etc. Never had the SFEMG. The ivig's help me and I have all symptoms. My neuro. says that I am just in that small percentage of people who don't test positive. Sounds like the percentage is maybe higher than they think. She told me though that since I was seronegative mg that I was not a candidate for a thymectomy. The ivig's and imuran are currently working pretty well though! Hang in there and good luck with the testing!

art-chick 07/10/2010

Thanks for all the support everyone. Yes red dutch girl, I am sure it was an SFEMG and it lasted an hour and half. . .and still nothin : (

Lindie, I thought they needed a CT or MRI to visualize the thymus properly, not a chest X-ray. . .you might want to check on that and maybe get a more supportive doctor--sometimes it takes time to find the right one. I am very happy with mine finally.

Thanks again Cathi! They are going to do an MRI for me now. I really dodged a bullet on that one!! I cannot beilieve your biopsy was negative---what a nightmare.

Darla--I don't understand why you are not a candidate for thymectomy because you are seroneg? If you have moderate or severe MG and are under 50 or even 60 yrs, neuros are recommending it as long as you don't have MUSK antibodies. But I am happy to hear your treatment is going well.

My breathing test was yesterday and I felt awful off mestinon right after the break from it for the SFEMG and I started with shortness of breath and the results were all over the place I guess. I almost went back to the ER but then it got better when I took my meds after the test but then I couldn't walk suddenly for the rest of the evening. When I woke up, I felt so much better and breathing and walking are almost back to normal. Luckily, I won't have to go off of meds again for a while and I start IVIG again on Tues. I really need it!!

deleted_user 07/11/2010

Wow!!! an hour and a half. I guess I am very lucky that mine was stopped early, it was only about 10-15 minutes. How ironic. I'm lucky to get a very high positive. You just have to laugh. You have to wonder about these diseases that they know little about. I hope the IVIG helps greatly and I'm very thankful that you are still receiving treatment. My old neuro wanted to take away my mestinon and I had to threaten her to keep it. That was before my SFEMG. I wasn't asking if you were sure because I thought you didn't know. I just know how hard it is to keep all these tests straight, especially when you don't feel well.

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