I have dealt with the chest pain since '94 although it seemed to have started after surgery for Thymoma. Seems to be nothing serious use an oddity which is hard to ignore. Your doctor should send you for a CT scan just to make sure everything on the inside is fine. Please keep in mind that with many of us the tests come back negative but were still diagnosed with MG.
Wish you the best.
Al

Good morning friends,
Thanks for the thoughtful replies. It's good to know when you're amongst friends.

Yes the bloodwork test for MG... I left that out of my initial post. It came back negative, so if MG is to blame I would be one of the 20% "seronegative" (right word?) people with it.

A CT scan hasn't been done to look at the thymus. I called the neuro's nurse this morning to ask about the chest pain possibly being related to the thymus. She was going to forward my question to the doc.

But on the same call, she said that just last night the doc had put in an order for me to have an MRI... Something he'd declined (for me) initially. My eye dr was the one who became concerned based on what she was observing, and cared enough to send the neuro a letter stating her suggestion of an MRI.

Many of us - especially if the initial diagnosis is made because of "ocular" suspicions - will test negative for MG.

The MRI is done to rule out a brain tumor, the CT scan is done to look for a possible thymoma. An MG diagnosis in the absence of positive bloodwork is a diagnosis of "elimination" - a doctor will rule out other things first.

If those tests come back negative, the muscle tests are performed. You indicated that your muscle tests came back suggesting there might be a problem, so that's another data point for your doctor.

If your MRI and CT results come back negative, the next thing that you can ask your doctor to do is a Mestinon trial. If you don't have MG, you will NOT be able to tolerate even a small dosage of Mestinon. If you are able to tolerate it, chances are that MG is what you are looking at.

You don't want to be on Mestinon when these other tests are being run, as it can skew the results of those tests.

While you are waiting for the results to come back, PLEASE treat yourself as if you DO have a positive diagnosis - by that, I mean take it easy. Don't over-exert yourself, and don't try to "exercise" yourself into feeling better (if you have MG, that's DEFINITELY not gonna work).

Allow yourself to rest and relax - it really is the best thing for your body. Let your family and friends know your limitations, and don't be afraid to ask for help if you need it.

Like I said, we are here to help you navigate your way through this - ask away (or complain!). And always remember - there are no "stupid" questions....

I'll just echo what these guys said. Since MG gets worse with repetitive (treadmill test) or sustained (holding an object) activity, your legs were simply getting weaker due to repetitive activity.

Don't ever ignore chest pain. It could be costochondritis or other inflammation, narrowing of the arteries, which don't always show up unless you do a nuclear scan, a blood clot, hole in heart, electrolyte imbalance, etc. A LOT of things can cause chest pain. A good doctor can figure that out.

Again, make sure they check your oximetry. They should do it while you are walking around too. In MG, the first thing that happens when our oxygenation goes lower due to weak chest wall muscles is that our heart beats harder to get us more oxygen. So, your pulse will go higher! Then, if you sit down with that oximeter on, your pulse will come down but then so will your O2 saturation! Checking oximetery for an MG is like an art form because we get worse when we DO something.

And, yeah, you could have a thymic tumor. Or thymic hyperplasia, which just means it's bigger than what it should be for your age.

I hope you get solid answers soon. In the meantime, don't overdo or push! Like Teresa said, it's quite dangerous for an MGer to do that.

Annie

Restorative,

I felt exactly like you did with the chest discomfort! In the year and a half before I was diagnosed with MG, I went to see a cardiologist twice for EKG's and all was OK. I thought I needed Xanax to calm down as it felt like a very mild panic attack. It usually happened in the morning when I woke up and wasn't doing anything strenuous. Now, since I had a thymectomy last month, these syptoms have disappeared! I didn't have a thymoma, but my thymus was slightly enlarged. Just something else to keep in mind. Our body seems to know when something is off.

Texas that's amazing, thank you for sharing. I have an MRI next week and although it's of my brain and cervical spine, I asked the doc if he would include the thymus in the imaging. I tell ya, my gut tells me it's just GOT to be related to that.

It and MG makes too much sense now... droopy eyelids, blurred vision after much eye use, weakness symptoms increase with physical activity, chest pain/pressure near the thymus, feel like a new person after rest, all of that.

Even if those tests come back negative, keep on insisting on the other tests. Too many doctors will stop if one or two tests are negative - they don't understand HOW we feel, and we look "just fine" on the outside.

If everything comes back negative, INSIST that you be allowed to do a Mestinon "trial" - for many of us with no "positive" indicators, being able to tolerate Mestinon is an almost foolproof "diagnosis".

It's important to know if you have MG; otherwise, you may feel "guilty" for not doing more around the house, and you could put yourself in a crisis situation. It's vitally important that ER staff know if a patient does have MG; otherwise, "treatment" could end up going south fast (there are some medications that are absolute no-nos for people with MG)....