Hi, Dave. Welcome to NeuroTalk! You have some good advice from these guys.

How much Mestinon are you taking, and how often? A neurologist can help you adjust that regimen to try to get the right balance for you. Be careful about taking too much. Patients can have what's called a "cholinergic crisis," where too much acetylcholine is making its way to the muscles. Finding the right amount/timing of Mestinon can take a while.

I believe that placing tape over the lens of glasses on the side of the droopier eye can help. I have forgotten the details of that little trick, so if anyone can help Dave out, please do! A neuro-ophthalmologist can help with that for you!

There is no way to predict how you will do with MG. Managing MG is as much about alternating activity with rest as it is about drugs.

Yes, some drugs can come with various side effects. Steroids tend to have the most damage in the long run. And steroids are hard to withdraw from. Immune suppressant drugs such as Cellcept, Imuran, Prograf, or others come with cancer risks. But if you have a good diet and introduce good antioxidant supplements and foods (i.e., mushrooms), that can help. IVIG and other treatments need to be thoroughly researched first, so that you can determine what might work for you. These days, they save IVIG or plasmapheresis for when a MG patient has a crisis. Although, there are patients who need to do those treatments on a regular basis.

MG for one person is not the same for another. Much depends upon your overall health or other health conditions. And having a great neuro who will help you figure out what treatments are best for you. There is hope for everyone!

One step at a time! Easier said than done, especially when you're concerned about being able to work and support yourself. I wasn't able to do drugs other than Mestinon. I can't work, and manage with rest, Mestinon, Flovent (for asthma), and not pushing myself! Also, I stay out of the heat/cold, try not to be stressed out (I meditate daily), have enough sleep/naps, take care of any infections right away, and take as good care of myself as I can. So far so good.

Good doctors can really help. A pulmonologist is also important for a MG patient to have. They work with neurologists in an ER/hospital setting if MG patients become worse. They can do basic breathing tests to check what your baseline is, especially MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) tests that are specific to neuromuscular diseases. They show how well someone is doing at breathing in and out.

When we become worse, other tests they can do are an O2 reading, arterial blood gas, ECG (to see how breathing is affecting the heart), and a good clinical exam!

Please don't be overwhelmed! I have had MG my entire life (I'm 59) and have had many exacerbations but only one full-blown crisis. My life isn't exactly what I dreamed of, but I try to enjoy every day! Attitude and reducing expectations helps a great deal. So do paper plates, naps, hiring someone to clean, etc.!

As far as MG spreading, most everyone ends up with generalized MG, where many muscle groups can be affected. I could go into more detail, if you wish. Just don't freak out! Many people manage these symptoms well.

Do not hesitate to go to an ER (rather, A and E) if you become worse. Are you in England or Europe? MG weakness can come on so slowly that you might not notice that you are worsening. If you can't breathe, swallow, or move well, then that's the time to go in.

Other info can be found at Home or Muscular Dystrophy Association

I hope you will give yourself some time to adjust to all of this! Any diagnosis takes time to get used to! If we can help in any other way, please let us know!!!


Annie