Hi wild cat well I've just had 10months of tests for my parathyroid and yesterday had my last hospital appointment to find my abnormal one.
As for the story it's been a constant fight or struggle to find why my MG is so different and symptoms I changed Drs and he was willing to to start seeing if anything else was their thats how it was found then I was put on a high dose of vitamin D didn't make any difference I have raised calcium and a list of symptoms as for the woman things I didn't understand any of it !!
I do hope you can get your Dr to help find answers for you
Alan

wild_cat, Congrats on getting published. Yes, writing is very cathartic. It's amazing how many people know and understand this prejudice and yet it's perpetuated in medicine anyway. Disgusting!

They don't really have good electrolyte tests available for purchase yet. And, ideally, it should be done when you are having symptoms. If you do it any other way than in a doctor's office, I can almost hear a doctor pooh-poohing it.

If you feel better after taking "glucose" out of your diet, could you have a glucose related muscular disorder or diabetes?

I'm glad you have a good doctor. Does it really matter what his colleagues have to say? Good grief, the doctors in the U.S. don't have a "pecking order" in place in clinics where they have to defer to their colleagues with more seniority! Maybe have a heart to heart with him after the new year.

Annie

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