Hi winic1,

I hear you! It is so hard when you have negative blood tests, and doctors want to see the positive lab results. I am in a similar position. My doctors have recommended going to Mayo in the past also, and it is not possible for me to go, either.

It sounds like you've tried to have this discussion with the neurologist before, but if not, have you tried asking him/her if it would be possible to try Mestinon? Mestinon is a fairly safe medication. Maybe you could ask your doctor if they would be willing to prescribe a small amount as a trial to see what happens. If it helps you, great. If not, then you'll need to keep looking for other options. By the way, Mestinon is more than just a bandaid. It's true that it doesn't cure the disease or alter its course, but for many MG patients, it really helps tremendously and provides all the treatment they need. If it helps you, it may help you feel much better, breathe better, and be able to do things you would like to do more easily and safely.

When you saw the pulmonologist, what breathing tests did they order? Unless they order the right tests, weakness of the respiratory muscles does not show up. That might be what you are experiencing. They need to order tests of maximum inspiratory force and maximum expiratory force, which are extra tests beyond the typical ones they generally order for pulmonary testing. You might ask the pulmonologist, if you are still seeing that person.

Another tactic might be to ask your ophthalmologist about referring you to a neuro-ophthalmologist if there is one in your area. They can diagnose MG. I know a friend who had their MG diagnosed that way when other tests kept coming up negative.

I hope the visit with the rheumatologist will be helpful. Maybe you could ask that doctor for suggestions also. They might have recommendations of other doctors to see, or other things to try.

It really is hard to wait for an appointment, and then have a discouraging outcome. Please hang in there, and take good care of yourself. I'm sending lots of good thoughts your way!

Take care,
Erin