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Overall I'm am getting worse and worse although every once in a while, for a few weeks even, every symptom will recede and I'll feel almost normal. That is soooo wonderful, and then I'm completely heartbroken when my body dives right back in to being so sick.

Hope this helps.

Ally[/QUOTE]

Hi Ally-

I would strongly suggest that you keep a running log of everything you eat/drink -medications and all- on a daily basis. In addition add what you have done during that day and a synopsis of your symptoms. I may be totally naive in all this but based on my own personal results I still believe (hope) that the disease can be largely or perhaps completely controlled through proper nutrition and supplementation. You MAY be unknowingly giving your body things it needs to control/mitigate the disease prior to or during the times your symptoms recede/disappear.

I started with the bulbar form over three months ago. VERY severe weakness from the throat up however it did not affect my neck muscles. I'm actually down 20+lbs from not being able to eat during that time plus the dietary changes I've made since then. In the beginning I had no idea what was wrong with me and quite honestly I was scared to death. I spent an incredible number of hours on the internet researching and matching symptoms. Thank God for the internet and the knowledge of those before me. Nothing seemed to match except MG.

This was during the first two weeks. My symptoms had not changed much during this time. I had seen my PCP but had not yet been able to see the neurologist. So- even though I really wasn't sure what was wrong I decided to attack it as if it were MG. Again- maybe I'm being naive in all this but I figured a certain set of circumstances caused this to occur, therefore another combination can make it go away. And I hadn't seen anyone yet who told me it couldn't be done.

So at the two week point I started experimenting. During the third week I noticed my symptoms starting to VERY SLOWLY recede. About every three-four days I would notice myself being a teensy bit better than I was before. I varied my regimen, adding and deleting things, trying to find a program that worked the best. At about the four week mark I saw a neurologist and got my diagnosis of MG at about six weeks in. I did NOT want to believe it. I saw a second neurologist. The diagnosis was again made as MG. I guess there is no doubt.

Gotta shorten things and wrap up a bit. I type to slow and have to leave for work. To this day my symptoms continue to improve. I have never taken the mestinon. I did not want to mask the symptoms because then I would not know for sure what was working and what wasn't. I'm probably 90% problem free. The better I get the slower the improvement seems to come but nonetheless it does come.

Is it possible that everything I'm doing is of no value and that the disease will come and go as it pleases? Of course it is. I am fully aware of any risks that may be involved. I saw my neuro again yesterday. He is not happy at all that I am taking no meds yet he had to admit that I was improved from the last time I saw him. What it came down to was this- I asked him if in his experience had he seen anyone get better by doing nothing. He said no. I said well, by accident or design then I must be doing something right because as of now I have been doing nothing but slowly getting better.

Read. read, read, The info is on the internet for all to see and piece together. If you are interested I will post more at a later date. Gotta leave now.

Rob D.