When my Hometown Neurologist ruled out MG, after I asked him to test me for it, and after telling me that maybe it's stress, I was referred to the Mayo Clinic- had two days of testing, and when I met with my Primary Dr on Day two, he told me I have MG. He said the words very slowly figuring that I had no idea what it was, lol. I think you would be wise to go to the Mayo -absolutely familiar with MG, and cutting edge facility!

You might have LEMS (Lambert Eaton Myasthenic Syndrome). Symptoms VERY similar to MG. biggest difference is the weakness is more in the legs than in the arms. Everything else pretty much as u described it. I have both MG and LEMS and am treated for both. LEMS is really rare, only 3000 people in the U.S have it, so not Neuros familiar with it. Mestinon helps it as well.

I'd recommend starting on Prednosone, as it treats the disease (either one) but it takes time. You gradually get better. There is also a specific med that only treats LEMS. 20 minutes after the first dose you feel better...your legs can move! I take 60mg a day, spaced out, and it's a wonder drug for the legs. I also take Mestinon and Prednisone.

There are other things that work as well, but they're more advanced, after what I've mentioned above. I'd suggest you start with these.
Good luck! I also was very active. This is an adjustment and it takes time to accept it. We're al here for you.

I should have told you a little more about LEMS. It's discovered by a blood antibody test, or an EMG. But if you're not looking for it, you can miss it, as its so rare. My blood tests showed it (along with MG), and my EMG confirmed it (different reaction in the legs). I think there are a lot of people on the LEMS support group website that have had a hard time getting diagnosed.

As I said, Mestinon and Prednisone work for LEMS, but there is a specific drug that only works on LEMS> If you have it, you will definitely need this drug, which you can only get with a LEMS-approved doc. It's an orphan drug, and only available thru clinical studies.

I am checking to see how to get you on the LEMS support group website. It is closed, and needs administrator approval. I'll let you know when I get the info. They are fantastic, and very supportive and informative,just like this one.

Hope this helps.

I started out with vision issues, followed by fatigue, then brain fog, and not long after the breathing issues started. Then came swallowing issues. I then noticed that my stamina tanked across the board. Push ups, sit ups, yoga, grappling, dirtbike riding, etc. all got worse instead of improving with training. It was not until a year later that people started asking me if my knees hurt. I didn't notice anything and my knees were fine, except people said I was walking funny. In the past 6 months my gait is wider, shorter steps, slow, and somewhat uncoordinated. This gets much worse with activity.

Does this pattern sound like LEMS? When I looked it up online, it seemed to be more common to start in the hips/legs? If this was your same experience, I will bring it up with my doctor.

Over the past months, like everyone else, I've been online trying to see if something is a perfect match, and at some point or another everything fits. The major neuromuscular, myopathy, neuropathy, other syndromes, all have many similarities. Most are much worse than my symptoms, so I understand why all of the doctors I've seen are confused by my condition and are as of yet unable to place a label.

I know Mestinon works wonders for me.

Pretty much every negative drug reaction I've had in my life is on the list of "watch out" meds for Myasthenia.

Ice pack test is positive.

Hopefully time will tell, and I am okay on my current meds.

I flunked the SFEMG and had double vision. I'm on half of the Mestinon dose because of cramps and diarrhea, but I have NO stamina. Working lightly in the garden for 20 min wipes me out. I'll see the neuro for the second time later in August. Hope there's hope.

I am struck be the idea that this is limbo. It's probably like fibromyalgia: not real vs. very real. My husband asks why I'm out of breath if I go up and down the stairs more than 3 times in a few minutes.

Yes, it still sounds like LEMS. We have trouble walking...they call it the LEMS "roll" and balance issues. To find the support group, either search Google for it or go to Facebook. Use the full name of the disease. Lambert Eaton MYasthenic Syndrome. The administrator asked me to send your name, and she will approve your request to join. Im sending TErickson.

I have Lems as well, and Mestinon helps me too. In fact, it saved me until I could get diagnosed and get on 3,4 Dap. My symptoms present as both mg and Lems, but I have never tested positive for mg.