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

Fascinating... you have read my thoughts. If too much cortisone can make a person with addisons worse.... and muscles weak ...as in cushings.. why do steroids get prescribed in elephant doses to MG people ? Even if antibodies are not found?

For 2 or 3 years now Dr had me on low dose steroids for adrenal insufficiency. By the time Endo was found - it was too late to test accurately. Any insufficiency I had was mild so he sent me back to GP. But I got weaker and weaker. I found out later that I was on a high dose magnesium supplement at this time. Steroids were increased to help my breathing but I had a worsening instead. This was 2.5 to 5 to 10mg Pred. It made no sense. The Neuro said this repsonse was 'in my mind' and could not happen unless 20mg Pred was used. It was not 'typical'.

But it DID happen. And scared me. So I was put back to the cortisone used for addisons - fast acting but short lived- thinking it must be addisons. And I was told to increase once again when breathing became worse. Now I am trying to taper down as an inner instinct is telling me to.That if I have managed all my life with some type of CMS or MG - then I can still manage IF my body is left ...alone.. and free of steroids....or reduced ... Not sure I can achieve it. Not sure which Dr is right. I just listen to myself these days... And for some reason my thyroid meds and steroids upset the MG applecart. That the peaks and lows of this rapid and short lived adrenal type cortisone maybe worsening me ? I have asked Dr after Dr and no one can answer my question. But it has been niggling at my thoughts for a while. Maybe I was misdx all along and MG was 'it' from the start ? Which I had managed for years with nothing at all. Yes - I would get weak and tired before others .... but I had learned to live like that and knew no other way. Very interesting.