Well, does your neuro know that Neurontin can make MG worse?! I do not like when doctors don't diagnose before dosing pills.

That's the problem with throwing a drug at a problem instead of a diagnosis. What if your neuropathy is from a B12 deficiency? No amount of drugs will make that better (except methylcobalamin B12). I know what I'm talking about. I had a severe B12 deficiency back in 1997-1999. Many doctors missed that. I have nerve damage now, even after taking B12 every day since then.

Okay, now I know your neuro is not well-versed in MG (no offense meant). Physical therapy for MG? The more we do, the worse we become. PT can work to kneed out tight muscles, which can occur with MGers. But PT will not get rid of muscle weakness. And that won't help a neuropathy either.

Find the CAUSE of what is going on!

Be careful while taking Mestinon. Mestinon caused asthma for me. The drug can also make asthma worse. Do you take inhaled Flovent or Advair? Since Flovent does go systemic, it does help somewhat with MG. But a steroid can mask the signs of MG, like antibody tests!

Out of curiosity, what dose amount are you on of Mestinon/Pyridostigmine Bromide? How often are you taking it? That schedule can take some adjustment over time. More of a dose isn't necessarily better. Some people do better on a consistent dosing schedule (like every 3 hours).

What part of Florida?! Dr. Allan Weiss is in St. Pete. He studied under Dr. Howard (NC). They are both MG experts. He is the one who diagnosed me. I can't say enough good things about him! If you can see him, that would be great.

Allan Weiss, St Anthonys Neurology Group - Neurology Doctor in Saint Petersburg, FL

Yeah, the heat and humidity are rough in FL. You have to stay out of it if you can!

I'm glad you're saying more things about your doctoring! We're not doctors but we do know how MG works. Whenever a doctor wants to give you a new drug, you have to research whether that drug will make MG worse. There are many that can.

Make sure the pulmonologist runs MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). Those are specific tests for neuromuscular diseases. And get ALL of the numbers, not only the highest/best one. Just before my MG crisis, my MIP went down with each try. No one paid attention and I ended up in the hospital for a week.

Keep asking those questions!

Annie