My experimenting with my diet over the last two weeks certainly points to the fact that it is affected by insulin response, though whether it is caused by that or merely exacerbated is another question...

I am finding that no carbohydrate and no sugars means clear speech, a feeling of lightness in my legs that I have not felt for years, a much improved ability to stand (up to seven minutes rather than 30 seconds, a miracle!), and general ease of activities. The problem certainly doesn't go away by keeping this diet but it is noticeably improved.

However, it hasn't gone away. There are still residual walking difficulties and limits on how long I can stand up for or speak.

I find a small amount of sugar gives a good effect -- i.e. improved ability to walk and speak. But I am finding any form of carbohydrate, potatoes, bread etc to cause me to become unintelligible and completely unable to walk within 15-20 minutes of eating. This gradually improves until my speech is back to normal 45mins-1hr symptoms begin with residual effects lasting anywhere from 3 hours upwards depending on quantity etc.

I am losing a lot of weight on this diet and feel terribly depleted, but I will do anything to avoid having another sugar-induced seizure. I'm keeping it clean and trying out one item at a time with a 24-36hr gap either side and keeping a diary for my hospital admission on 15th Jan. Lets hope they listen!

Though itīs not the root of the problem really glad you found something that helped temporarily and could act as a further clue to solving your own myasthenic mystery, wild_cat....

The only two dietary experiences that also helped me in my life were the following:

During constant chronic fatigue of M.E. some years ago, whey protein would act like tensilon on my muscles, every single challenge portion would get me from floppy unresponsive ragdoll-like to alert, upright energy in muscles but effect was always shortlived.

During a rather long hypoglycemic phase which often resulted in shaking, slurred speech, and so forth I was able to tame the rough blood sugar seas into the calmest lake imaginable with just the use of dietary modification. Some things I remember: Cut most sugar out/down….protein and not carbs to hit empty stomach first thing in the morning. I also used coconut oil for a 12 month period. Though there is something that can detrimentally affect everyone in all products, this happened to work for me at that time. I can eat anything now but donīt gravitate towards sugar products anyway, everything tastes oversweetened these days.

Good luck on the 15th, (maybe I will visit you after my own pulmonary appointment and theyīll end up keeping us in there together!!!)


Anacrusis