Quote:
Originally Posted by art chick
It's like I am stuck in this horrible crisis where they will only treat the symptoms until they are certain of the disease since I am sero-negative. But I probably (?) cannot get better without treatment of the actual disease, right?
And when I mentioned plasmapheresis, the doc said I was getting WAY ahead of myself, clearly they won't give me treatment without testing to be positive of the disease first. And it sounds like I need to try to go off the meds somehow so I don't get a dirty test but I may end up in the hospital trying to get to the testing! What do people do in my case?? Is there a solution? How do people get past this?!
debra
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I am a bit confused...I don't understand why they are asking you to stop taking medicine which may cause your MG to get worse (assuming you have MG, or even that the medicine you are taking is making your symptoms better).
I take only Mestinon for my MG and this drug only treats the symptoms of MG but does nothing to make it better. All of the drugs given for MG only treat the symptoms! (At least this is what my doctor said). There is no cure for MG although some people do go into remission.
So I guess what I am wondering is this. If the Mestinon and/or Pred you are taking is helping your symptoms, why not just leave it at that unless your condition gets worse? Why risk getting worse just to have tests done and then the treatment is the same as what you have before the tests?
Am I missing something?
As for me, my doctor tells me my symptoms are "consistant with MG" and not that I have MG. The Mestinon is working so that is good enough for my neuro and good enough for me. In fact, I would refuse further testing unless I start getting new symptoms that aren't typical for MG. I hate those tests! Makes the MG worse.
I do understand you are sero-negative and I tested positive for antibodies...but still, if the treatments are working why the further testing? Especially if it may make your condition worse.
Sorry for rambling, just worried about what could happen if you stop taking your medicine even for that short time. I know I forgot my Mestinon once thinking I had taken it and left my house...I didn't think I was going to make it home and almost dialed 911, but I did make it home, just had to keep parking by the side of the road and resting. And I only missed my Mestinon for a short time! It scares me to think about! Maybe my MG is worse than yours, hopefully.
Sorry for all that you are going through, take care of yourself.
