First, I want to thank Mike (pingpongman) for introducing me to this helpful document on the treatment of our disorder. It answered so many of my questions. It also has empowered me with the knowledge that will allow me to take a more proactive role in my treatment.

The docuemnt is entitled Myasthenia Gravis: A Manual for the Health Care Provider. It is published by the Myasthenia Gravis Foundations of America. It is in PDF format. You can read it online using a Web browser, download it and read it offline with an Acrobat Reader, or you can have it printed and bound. I had mine printed. I will be taking it with me to my next appointment with my neurologist. I'm even going to put the PDF file on a thumb drive and give it to my doctor.

http://www.myasthenia.org/LinkClick....w%3d&tabid=125

While the document is intended for healthcare professionals, there is much in it that can be helpful to us. None of us will read it from cover to cover or understand the more technical aspects.

I found Section 2.8 Treatment of MG to be very helpful, particularly Section 2.8.1 Cholinesterase Inhibitors (Mestinon) on page 17, and Section 2.8.3 Corticosteriods (Prednisone) on page 19.

I learned a lot about Mestinon and the proper dose schedule. With the knowledge and assent of my neurologist, I started experimenting with the times that I take Mestinon. I was prescribed two 180 MG Mestinon Timespan tablets a day, one every 12 hours. I was also prescribed three 60 MG Pyridostigmine tablest a day (generic Mestinon). The only instruction was "take 1 tablet by mouth 3 times daily." My assumptions was one every eight hours, but it does not necessarily need to work this way.

I learned the following in Section 2.8.1 Cholinesterase Inhibitors

No fixed dosage schedule suits all patient. The need for cholinesterase inhibitors varies from day to day and during the same day. Different muscles respond differently--with any dose, some mussels get stronger, others do not change and still others become weaker. The drug schedule should be titrated to produce an optimal response in muscles causing the greatest disability.

My worst symptoms are my face and jaw muscles. Sometimes I cannot speak. I have great difficulty chewing. I also have great difficulty drinking. I changed my Mestione schedule to concentrate on the waking hours. Although I take one of the Mestione Timespan when I go to bed, I concentrate the others in a more compressed time-frame during my waking hours.

The early results of changing my Mestione schedule seem to be good. I could speak louder and longer. The severity of my face and jaw symptoms were greatly reduced. It was very much easier to eat and drink last night. It was the best it has been in three months. I could actually make the kissing sound with my lips, to the delight of my cats. I did not feel compelled to help my jaw with my hand. It stayed closed by itself. This might not be entirely due to the change in my Mestione schedule.

I believe that much of my improvement is due to the addition of the Prednisone. But if my symptoms continue to be less sever than they have been over the last three months when I was diagnosed, I will need to find the proper Mestione schedule for me going forward.

But as the quote above suggests, some muscles did become weaker. This is the first time that I have experienced weakness in my arms and legs. It was not too bad, but I had difficulty lifting my 20-pound camera bag to my shoulder. I basically needed two hands to place the shoulder strap. I also had a bit of difficulty getting out of my taxicab and up into my van. I had to exert a bit of effort to climb a few stairs.

I did not have any vision or breathing issues. I can do a 28-count on one breath. I did "feel" my eye muscles, and it took a little more effort to keep my eyes closed than it did to keep them open. This, of course, is a classic symptom of MG.

I believe this might be due to the more compressed Mestione schedule. I plan on dropping the evening Mestione Timspan for a few days and see if there is any improvement in my leg and arm muscles. I will be seeing my neurologist on February the 3rd, so I have some time to gather more data.

More may not be better. Timing is important too. You have to be sure you do not take too much Mestione in too short of a time period: "Acute overdosage my cause cholinergic weakness of respriatory muscles and apnea." Read Section 2.8.1 for full details.

Note: Before you try and change your Mestione schedule talk to your doctor.

I also learned a lot from Section 2.8.3 Corticosteriods

My doctor prescribed Prednisone on January 15th. Since it was prescribed between appointment, I did not have a chance to discuss it with him. The preferred form of communication with my doctors between appointments are faxes. I faxed my neurologist one day about my worsening symptoms, and he called in the Prednisone prescriptions to my pharmacy the next. He then had his medical assistant leave me a voice message about the new prescription. I sleep during the day and usually turn off my phone. At the time I knew nothing about Prednisone. What a wonderful country we live in, send a fax and get drugs. I'm planning on sending my doctor another fax telling him I have have a headache, and see if he call in a prescription for OxyContin or Vicodin.

My assumption was that I would need to use the large doses first prescribed of Prednisone for a long period of time, an unpleasant prospect given the long-term side effects. But according to the MGFA treatment recommendations, this may not be the case:

The most predictable response to prednisone occurs when treatment begins with a dose of 1.5 to 2mg/kg per day. This dose is given until sustained improvement occurs, which is usually within 2 weeks. The dose is then decreased over many months to the smallest amount necessary to maintain improvement, which is ideally less than 20 mg every other day.

I do not believe my neurologist knows about the MGFA treatment recommendations. He prescribed me 60 MG of Prednisone each day for 30 days. He did not tell me about decreasing the dose overtime to the smallest amount necessary to maintain improvement. I think I will have "sustained improvement" long before the 30 days.

-Mark-