[pchristopherbell]

My name is christopher and i am new to the group. I wanted to find a place to exchange ideas and info. He is my background and where we are at today.

About twice a year for last 10 years I have developed an issue where i could not swallow that lasted a month and went away. Each time I went to gastro docs that ruled out reflux. After a couple years they then moved to the globius hystericus, or the its all in your head and take this xanax/ativian. This only made me see visions of my dead grandmother and didn't help me swallow.

In aug 2009 the swallowing turned on, and it didnt turn off. 40 days with no food intake and last 10 days on water lead them to finally at my begging to insert a peg tube. the tensilon test was iffy and the electrical test was iffy, and both neuro guys were not willing to say i had MG and wanted to me go else where. This all happend during the long time between aug 2009 and now, and I have an appointment with mayo clinic on aug 24th. Almost a year after this all started really bad.

A few notes on what I have observed. Heat outside cause me to get worse. I will get really tired and the swallowing goes backwards. I can swallow more and better when i get up and this decreases as the day goes on. They allowed me to try mestinon 60mg 3 times a day. I really can not tell a difference but being a RN i tried 120mg 3 times a day and i still can not tell a difference really but from reading other post bout how it would make you sick if you didnt have MG, I dont feel a thing. It does not make me feel bad and it does not make it so that i can eat normal either.

Mayo clinic agreed to see me based on my records and my personal documentation. When they said it was in my head I took detailed personal notes. Every flare up can be tied to an event...my dad getting cancer, each time he came out of remission, his passing away and extreme heat of july/aug. In my heart I feel like I have MG but the doctors in Memphis just seem to drag their *** and don't seem to be taking this serious. My Internal Medicine doctor is great and has helped me in ways above and beyond a what a doctor normally does, even giving me some testosterone to help combat the fatigue. I know this may not sound as detailed as some can provide as i did not want to over kill being new, but i hope i am on track to getting better. I wake up every day feeling like i just worked a 48 hour shift. It is a conscious act of my will to do anything in life and the feeding tube is irritating at best (although its my new best friend). I am very frustrated since I have very good private insurance but feel like i have been kicked to the next doctor because this is not a cookie cutter diagnosis and requires someone to think outside the box. any input would be welcomed, and sorry if the post was a bit long. I look forward to helping others here when my condition is confirmed and i begin to learn the ropes of my new life as well.

christopher