hi everyone, I'm new to the site, I'm a 28 year old female, married mother of 3. I've been having unusual symptoms my doc thinks probably is MG. i have tested <0.20 for AChR. here is my history… I've had bells palsy 3 times, the last time whilst pregnant 1.5 years ago was severe and lasted 6 months. mri was fine. also while pregnant, my lower leg at the end of the day would ache become heavy and fatigued, the more i used it the weaker it got, but i continued to use it and became fully paralysed but could still feel touch, could not weight bear or wiggle my toes, i lost complete use, but it always "halted when i sat and rested, but progressed quickly with walking around the house, this happen twice with pregnancy then again 2 months ago. the last 10 months i have had extreme dysphagia on and off, which has been depressing it s always worse at night, it progresses through the day. I've had on and off blurred vision for 2 years that no eye doctor can explain. in the last month, my right hand drops things frequently, and i was sending a text with my mobile and my hand stopped working completely for 20 seconds, not a cramp or spasm, it switched off and wouldn't work. doc has me on 10mg mestinon 3 times a day and most times it does help. something else thats interesting, when i seen an eye doctor a year ago and they put the dilating eye drops in that are anticholinergic, and within seconds could not breathe, it was as if my air ways closed 90% and i honestly thought i was going to die. also 2 weeks ago, lasting 4 days,i struggled to breathe, it was as if breathing in and out wasnt working, like suddenly there "was no air" or that my lungs were skipping a beat, like id have 4-5 good breathing in and out then a couple of bad, this lasted 4 days and was terrifying, what are all your thoughts? does this sound like MG? my doc and neuro thinks its very possible.
ps- I've had every blood test there is to rule out loads of other stuff..

It does sound like it.

It sounds very similar to my experiences before I was diagnosed. I had a lot of respiratory troubles, vision difficulties, would be holding my phone or other object and all of a sudden it would fall from my hand...most of the symptoms were transient and mild, until my second pregnancy and then even worse after delivery when I couldn't ignore/dismiss them anymore. I have noticed that I have a lot of generalized fatigue, but in terms of my limbs my left arm gets particularly weak and tingly when the all over fatigue is at it's worst. Not a single MG related test came back positive for me, but the symptoms all of it improved with Mestinon, so my neurologist confirmed the diagnosis.

Hi, Stevee. Welcome!

Did your neuro test for the MG MuSK antibodies, too? AChR antibodies can fluctuate greatly and one negative test doesn't rule out MG. Did they test your AChR modulating antibodies as well?

I'm sorry you've had Bell's 3 times. Has anyone tested your B12 level? Studies have shown that a combination of Pred and B12 helps to heal Bell's more quickly.

I dread having those eye drops, for my MG always gets worse. Does it also take a longer than normal time for your eyes to stop being dilated? Were you in the eye doctor's office when that happened? That's a classic 911 situation! They could've given you Tensilon (short acting cholinesterase inhibitor) to counteract the Atropine in the drops.

Yes, it sounds like MG. Do you have ptosis (toe-sis)? You might not even notice that your eyelids are drooping unless you take photos of them. You might notice it in old photographs. Usually one side droops more than the other and is "dominantly" droopy. When an MGer is doing worse, they both droop equally.

An odd little test is to pull up on the droopier eyelid for a few seconds and then you should begin to see a game of seesaw between your eyelids! It's called "enhanced ptosis" and is indicative of MG.

A neuro-ophthalmologist is the one to see to assess "blurry" vision. I thought I only had blurry vision, but it was double vision. Take your pointer finger at an arm's length distance from your eyes. Bring it slowly towards your eyes. Do you see one or two? If two, close one eye. Does the double vision go away? That's indicative of MG, too. It's called "binocular vision."

Since you're experiencing shortness of breath as well, you should be fully assessed by a pulmonologist! They can do basic PFTs, plus MIP and MEP breathing tests which are more specific to neuromuscular diseases. They're great doctors to have and work with a neurologist when a patient has an MG crisis.

A MG crisis is when you can't swallow, breathe, or move well. AND it's an emergency, in need of dialing 911. You can't know how quickly a crisis will come on or how severe it will get. It sounds as though the eye drops sent you very close to one, if not into one!

10 mg. of Mestinon is very low. Do you tolerate it well? You can ask the neuro if you can up the dose to 30 mg. Make sure you get their okay first. With Mestinon, it's not always more that is better. Sometimes the time between doses needs to be shorter. It might take some time to figure out what is best for you.

It must be hard to have three children and be facing this disease. There's a lot to learn about MG, but it is manageable. Some drugs can make MG worse. Getting too hot will make it much worse, even if it's only getting heated up by chasing after kids!

Having a fan blowing really does help to keep your body temperature down. Sit whenever you can, instead of stand. Taking a nap helps, too, especially after you do any errands or socializing. Socializing uses up a lot of muscle groups at once and can make you much worse.

What else can we help you with? I think the important thing is to get some more help (i.e., pulmonologist). And to tweak your Mestinon with your neuro some more.

Until you have more help, take it easy. And don't feel shy about dialing 911 if you need to!

Annie