[Juanitad]

I've also been questioning why prednisone isn't working as quickly for my double vision as it has in the past and I finally remembered a conversation I had with a neuro after my thymectomy 5 years ago when he was talking about my possibly getting remission after the surgery.

My logical mind said "If the t-cells have destroyed the muscle receptors, can they regenerate or what? How can I get remission when I don't have the muscle receptors?" His response was that some of the receptors are destroyed and they can't regrow. However, some have only been damaged and they can repair themselves. The hope is that there are enough left to repair themselves over time and that is why remission doesn't come immediately and also, why it doesn't come to all; they just don't have enough receptors left to make a difference when they do repair themselves.

Does this make sense? Should we be looking at it as the prednisone is giving our bodies a chance to heal the receptors and over time, we may see improvement? Or am I just crazy?

[Nicknerd]

That makes a lot of sense, Juanita...Thanks for the that!

It makes me sad that the destroyed ones can't somehow repair themselves too, though...

[AnnieB3]

Good thought, Juanitad. What I've read in books mainly says that about 1/3 of the NMJ is destroyed but I don't know how they can say that given they don't look at everyone's NMJ.

There was a clinic I went to where a neuro said "They often can't see the neuromuscular junction in adults but can in children." This was a BS line/lie given to me to shut me up but it shows you how much "disinformation" there is out there. They can see the NMJ when they do a muscle biopsy but the problem is that they don't do it a lot with MG patients. So it's hard to tell what really happens there to ALL patients.

Some of us may not have as much destruction as others. And not all immunosuppressants do the same thing to the immune system. That's why some people do well on Cellcept but others don't. I'm certainly no expert on any of this but neither are the neuros yet.

Tyson (are you reading this?!!) is taking Accutane and it may interfere with the action of Pred or supercharge its reaction. The two are NOT supposed to be taken together. And there are a lot of other things that can interfere with the taking of drugs or can alter their effect, like a slower or higher metabolism rate.

It's such a crap shoot, whether or not this or that will help you.

Annie

[Alan53]

the first symptoms i had was the double vision later came the general weakness then i went on to preds 60mg every other day the last thing to inprove was the double vision and even thou im now off all my drugs the double vision is still mild the weaknest is back i think the preds do a great job
of repairing the receptors
it does make sense juanitad
alan