Quote:
Originally Posted by LPuckett
Alice, I am a new member today and I am glad you are here. I am a 68 YO male with MG symptoms and they are getting worse lately. My Neuro only advised me to take Mestinon and if that was not successful, start on Prednisone but after reading this thread I am very reluctant to do that in light of H1N1 and anorther issue I have.
I have researched minimally invasive Thymectomy for nonthymoma patients and I have three surgeons willing to do it. I have read lately that most surgeons who do this are saying anybody with a positive MG antibody test and showing early symptoms should have the surgery - you can go home the next day and 80+% have some improvement with 30% of those in complete remission and the remainder with little or no meds. My Neuro was reluctant because of my age and time for improvement( can be years) but my parents both lived to 88 and 96 and I have a good chance for improvement.
Have you had a Thymectomy and if so was it successful?
Do you think it is right for me?
IV IG? Thanks for your input!
|
Hi,
surgeons are always willing to do surgery. that's what they do for a living, isn't it?
on a more serious note,
there is no evidence based data regarding the benefit of thymectomy, even in the most classical group for it. (young, AchR positive patients). let alone less classical patients.
your neuro's suggestions sound very reasonable to me (of course I don't know all the details). most people do very well with relatively low doses of
prednisone.
I am the exception, not the rule.
I have a very rare, unusual, bizzare form of this illness, that even the best, world leading experts have not seen.
I personally believe that there are other patients like me in the world, that just didn't have the abilities and clinical skills to fight like I did, but still they would be very few and not the typical patients.
I hope your course would be much more benign and that you will indeed get to live a good and productive life, like your parents and even more.
best,
alice