I just got back from the MG specialist (a neurologist) and it was a good visit. I felt heard and understood, and like he genuinely wants to help me figure out what's causing my weakness.

After listening to my story and discussing tests that have already been performed elsewhere, the doc is thinking it's one of these two things:

MG - I have the generalized and ocular symptoms. What makes MG questionable is the fact that I have muscle stiffness & soreness immediately after using muscles (esp legs and arms). He said that muscle pain is not a feature of MG.

vs....

A myopathy - Something to do with investigating how the muscles metabolize. (I didn't understand the rest)

He ordered a Mestonin trial for me to take and see if it makes a difference. He also ordered a bunch of blood work, incluing MuSK which hasn't been done yet.

Another order was for an EMG up on the face [EEEEK], and based on the blood work results, possibly a single fiber EMG.

He's considering a muscle biopsy and is going to check out the blood work results before ordering that.

As the patient, it felt good to hear the dr say to you, "If you went from running 5k's and bodybuilding to not being able to walk 2-3 blocks, something's definitely not right."

Send any advice, hints, mestonin tips, etc my way... I'm all ears.

Sounds like you have found a real gem! Good luck with your tests. Some are no big deal and some are a bit uncomfortable...but whatever it takes to get a dx is worth it, right?

Take care - so glad you have a doc who is tuned in and wants to help!

(post dr. appointment realization)

Aagh! Sitting here at work I just realized that I didn't bring up one of my main symptoms when I met with this new dr today!

Of all things, I forgot to tell him about the spot in my upper chest (left side) that hurts off and on. Since there's some suspicion of MG, I'd made a mental note to see if he thinks it might be related to the thymus.

Just phoned the doc's nurse and left a message to please share with him what I'd forgotten.

Sorry for the play by play here.... Posting these updates because you guys 'get it' : )

I just took my very first dose of the Mestonin trial. I told the dr that I've always been highly sensitive to medication.

He prescribed me an initial dose of 60mg, and said to take a half tablet 2x/day.

It's been about 45 minutes now and I feel different... much much better. I have the muscular energy to talk with my husband after work, make dinner for the family.... before I've always been so depleted after work that all I could do was lay still and endure muscle pain from using the muscles normally throughout the day.

Perhaps I'm imagining things, but I don't think so. My husband just commented, "your eyes are open more now. And you're talking."

Maybe we're onto something here.

Welcome to the wonderful world of Mestinon!!

My hubby oftentimes comments on if it's time to 'take a pill'! He can tell by looking at my eyes, corners of my mouth, and the tone/pitch of my voice - and is (much to my chagrin) almost always right!!

Junior mestonin club member here,

It is now 3:30am and I've now discovered the other joy of the mestonin club: upset stomach.

Not horrible (knock on wood).... just had a small bit of food. Mentally am putting it into perspective like being pregnant: nauseous but its worth it.

I just put up with it. I take over the counter meds to combat it. As you get more and more treatment you will have other problems but try to deal with them one at a time.
Mike

The mestinon messes with my stomach also. I found that i can only take a half pill at a time. Remember it only lasts about four hours so I take a half pill every four or five hours. If I have increased symptoms I take a half very two or three hours till it subsides. You will find you will have to figure out what the right combination is for you. Also remember too much will mimic the MG symptoms and if you are like me your stomach will let you know.
Isn't it a pleasure when you finally find a dr who understands. I went through three before finding my current nuero who actually listens.
Hope all works out for you.
Al