Nicky,

it's much more complicated then that.

I don't have anti-Ryr (I had it tested), but I do have anti some type of MuSK.

I think you need to have a combination of impairment in calcium entry into the cell and in the function of the Ryr, or some related protein, in order to do worse on steroids.

I won't go into the details of my own illness, as I am still not entirely sure what's going on. I think I have most of the pieces of the puzzle, but not all yet.

it does not at all surprise me that you SFEMG was abnormal, nor does it surprise me that it was anbormal in a muscle that did not seem to be clinically involved. it's just another (possible) proof that although the acetyl-choline receptor antibodies, impair the depolarization of the membrane, it doesn't effect the muscle contraction that much. only when you add steroids to the equation which lead to further impairment of caclium entry into the cell, do you start having problems, and that's why you only started to have droopy eye-lids, once you started taking steroids.

I also find what you nero said quite unreasonable. we are constantly trying to find better ways to stratify patients, and not only diagnose their illness, as leukemia or lymphoma, but also to know their prognosis and adjust their treatment, according to the sub-group they belong to. so, I would think that knowing if you have other antibodies is extremely important in making managment decissions in your case.

also, tacrolimus has a direct effect on the ryanodine receptor, and that's the way it supresses the lymphocyte response, and there is one small study that suggests that MG patient with anti Ryr do better with it then with other immunosuppresants, because of this effect on Ryr. obviously, this is not enough to prove anything, but it should (in my oppinion) at least lead to some futher thoughts on the matter.

the person that has done the most research on Ryr, is Romi. but, it seems that his approach is very controversial in the western world, and as you see most of the studies on this are either from his group, or from the far east.

of course I am just speculating here, but possibly you will do better as you taper down the steroids.

alice