Burning & aching normal for MG?
 

I'm new here and aren't officially diagnosed yet,
My blood work has come back negative, and my Neuro did an nerve conduction test on me yesterday (I think that's what it was, he shocked me over 184 times on my face and shoulder) it came back negative.
He still believes I have MG due to my symptoms and has ordered me to get a CT of my Thymus, also iv Been on 60mg 3 times a day of Mestinondor over a month and to be honest I'm not sure if it's working, or if it's just my mind, because even after I take it I feel like it helps with my weakness but my aching and burning is still really bad.
I read somewhere that burning and aching aren't symptoms of MG.
And it really makes me wonder if I have something different wrong with me.
Because my muscle hurt and ache and burn type feeling so bad 24/7 and it gos along with the weakness.

I guess I'm asking if this is normal, to have very aching muscles every time I barley move them.


Sorry it's long, iv just been trying to get a diagnosis since 2010 and I'm starting to feel hopeless again,
as what ever I have seems to be getting much much worse the longer time gos on😢

Aching, burning muscle pain, is not standard for MG. But that doesn't mean that it isn't MG. Lots of other things COULD cause that.

What else has been ruled out? Why does Neuro think that it is MG? From my experience it is not exactly their first choice dx.

Does the Mestinon help? I still don't have a dx, but Mestinon helped a heap. Even with the intense muscle pain that I had in one arm. I had another injury to that arm and I believe that the muscles had simply gone too far. And that was an intense burning ache. Painkillers didn't work. But Mestinon did. Strength improving slowly, and pain gone.

Sorry not to be more positive one way or the other, but MG is a bit like that.

If Mestinon was in your body when you had the SFEMG - then it probably distorted your results. My neuro said I needed to be off Mestinon for at least 2 days before the test.

Hi, Amber. Welcome to the forum!

Have you consulted with a rheumatologist? That would be a good thing to do to rule out any inflammatory condition. There can be a lot of pain, aching, and burning with those. Do you have any other symptoms?

When muscles become really weak, they can feel as though they have "athlete burn." Do your arms, for instance, feel as though you can barely hold them up?

Have you looked in a mirror to see if you have ptosis (eyelid drooping)? Look at your eyes first thing in the morning. Take a "before" photo. Then see what they look like later in the day or after doing an activity. Take an "after" photo! Try to take the photo in the same location, with the same lighting, head tilt, and distance from the phone/camera.

That kind of evidence is anecdotal, but it does help put a clinical picture together. Some people don't even realize they have ptosis!

I agree with Sue. If you were on Mestinon, it affects the results of a SFEMG. And not all patients with MG have a positive test!

Are you short of breath? If so, you can get breathing tests done by a pulmonologist to see if you have a restrictive breathing pattern (typical of MG) or have chest wall muscle weakness. The tests that show weakness are Maximum Inspiratory Pressure (MIP) and Maximum Expiratory Pressure (MEP).

If you do have MG, take it easy. Don't get overheated, because that can make MG much worse. If you are so weak that you can't move, swallow, or breathe well, you need to be in an ER.

Did they do the Acetylcholine Receptor Antibody tests (binding and modulating) only? Did they do the MuSK antibody test? Being seronegative doesn't mean that you don't have MG.

I hope the doctors can figure out what is going on. It might take some time, so take care of yourself in the meantime!

Annie