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Old 08-27-2017, 08:15 PM #1
sickmm sickmm is offline
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sickmm sickmm is offline
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Question Do I have MG?

I am a type 1 diabetic, and I am thinking that something else is going on with me.

I love to run at the gym, but over the past 8 months or so, I've been progressively growing unable to drag myself through more than about 1.5 km (vs. 4-6 km previously). I am also quick to tire and feel like I have no stamina, and my FEC1% is below 70%. Imaging results of brain and chest/abdomen are clean.

My hands and arms get weak and sore easily -- hairstyling is hard for me, and if I do a single crayon rubbing with my kids, my hand muscles burn. My jaw gets tired and freezes up when I eat more than a few bites of tough, chewy or especially crunchy things. It's hard to prop myself up with my arms. Etc etc etc.

I've been poking around about other autoimmune diseases that might cause these symptoms, and I'm beginning to wonder if I have MG. I do have one slightly droopy eyelid, so I did the look-up test (image below), followed by the ice test (image above). Looks to me like a pretty definitive MG outcome, but does anyone else have any insights to share?

Picture here (sorry, please delete spaces): *edit*

Thanks!

Last edited by Jomar; 08-27-2017 at 10:06 PM. Reason: * Sorry, no linking for new members, per guidelines
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AnnieB3 (08-30-2017)

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Old 08-30-2017, 12:40 AM #2
AnnieB3 AnnieB3 is offline
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AnnieB3 AnnieB3 is offline
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Hi, sickmm. Welcome to the forum!

Imaging of the brain and chest are not necessarily going to be revealing. They can rule out other conditions, but negative tests can't rule any in.

On the off chance that you have MG, you should not be running, especially not in the heat. Heat can make MG exponentially worse.

Have you brought up the possibility of MG to a neuro. Tread carefully, many neuros don't like when patients think they may have a disease! You can always go see a good neuro-ophthalmologist and have them assess your eyelids/vision. They are not the same as a regular ophthalmologist. They can check to see if you have fatigable eyelid muscles or have double vision.

The breathing tests you should have are MIP and MEP. Those are specific to neurological diseases. They tend to go downhill the more you do if MG is not treated. Find a good pulmonologist who can run those tests.

If you have one eyelid that is droopy, pull up on it. Does that one go up, while the other one goes down? That's called "enhanced ptosis." Pretty typical of MG. Does that ptosis worsen if you gaze upward for 20 to 30 seconds? Take photos before that and afterward. Then do the ice pack test again and take more photos. Using a cold washcloth works too. Use the same angle, head tilt, lighting, etc. for those pics.

You can always ask for the AChR antibody tests. Even an internist can run those. Try to have them sent to Mayo, since they tend to be more accurate.

Just take it easy. People who do have MG can go into what is called a MG crisis, where they can't move, breathe, or swallow well. If that happens, you need to dial 911. Doesn't matter if you have a diagnosis. If you have MG, the best place for you is in a hospital. Don't drive either! A MG crisis can happen quite quickly and there's no way to know how worse symptoms will become or how rapidly.

I'm not saying that to scare you, but to make you prepared just in case.

I hope you can figure out what is going on. Please let us know how else we might help, okay?

Annie
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