Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 05-14-2007, 09:33 AM #21
evy o. evy o. is offline
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Join Date: Feb 2007
Location: ND
Posts: 5
15 yr Member
evy o. evy o. is offline
New Member
 
Join Date: Feb 2007
Location: ND
Posts: 5
15 yr Member
Default thanks for the update

Thanks for all your information Angie. I am meeting with my neuro on Wed - she too has extensive knowledge re MG. I have done a lot of research about the high dose Cytoxan and not fully decided yet. I have significant adverse reactions to all conventional treatments so looking at the reboot option. I am nurse by background so pretty familiar with how nasty a drug Cytoxan is in routine doses, and pretty sure the high dose must be rough to get through. I have very unusual couse of MG - almost symptom free, but go into full crisis with respiratory failure within about 1/2 hour. No warning signs so my docs all feel a pretty dangerous course - worried if happens in wrong place I would not have time to get to help. Not sure the risks of Cytoxan are worth it for me or not???
I will let you all know if I proceed with this and how it goes......
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