I had a anterior mediastinal mature cystic teratoma removed with lower 2/3 of the thymus excised when I was 14. Doctors now call it a Thymoma? People ask if I have been in remission since 1985 when I had this surgery? No I don't think so. I don't think I had MG before this surgery. I think MG developed sometime afterwards from having my Thymus removed but I chalked it up to not having an immune system and always getting sick. It wasn't until the year of 2010 when things started to happen that I could tell something was really going wrong. It has been up and down with strange things but when I had a major surgery Dec 2011 it kicked in the MG for sure, voice loss, breathing issues for 4 months straight. All kinds of specialist & test and no one could diagnose until a Neuro was put on the team in Nov of 2012. I am double sero negative but at that time generalized symptoms shoulders, arms, hips, upper legs, neck, double vision, blurry vision, raspy voice or complete voice loss and sometimes breathing issues. Starting on 60mg cut in half. Then moved to 3 60 mg a day which worked great for months. I was coming off of prednisone due to it causing Cushings Syndrome, I had been on a small dose of 5 mg every day for past year and when in hospital much higher doses. So coming off prednisone and taking the mestinon, I started to feel better
Then summer came
some emotional stress added
and when I seen my Neuro in Sept I had bi-lateral Ptosis, facial droop and fish like mouth...MG had now taken over my face. My swallowing was being effected, speech was slow, thinking was slow, walking, everything. She added timespan 180mg at 5pm. Well this felt great, eyes perked right up! Could smile. Then I am not sure what happened but I started to wake up choking at night for about a weeks time. So I would take a 60mg. I called my Neuro's office told them I need to come in or need a sooner appt. They told me go to ER. Go to ER, they treat me as if I have asthma? Couple of breathing treatments, benedryll and sent home. Continue with a duoneb treatments and benedryll for two weeks. I am getting weaker and weaker. Have I mentioned since stopping the prednisone I did recover from Cushings while I was feeling good I was swimming and had went from 280 down to 220. Then from being sick laying in bed I am now down to 160. So Dec 17 I finally see my Neuro and she is shocked. Now I had called, emailed telling them I need to see her but I don't think those messages get through. She seemed very concerned, she sees I am not stable FINALLY... She adds another timespan in the morning so that is 3 60mg and 2 timespan 180mg and says come back in 6days. 2 days before Christmas. I come back in the morning and because I still look horrible she adds another timespan now up to 3 a day and come back in 2 weeks. Still don't look good or past test, still week so now I am at
6:30am 60mg 7am 180mg 12pm 180mg 5pm 180mg 10pm 180mg and can take 30mg inbetween if needed.
Does anyone take this much Mestinon? I am feeling better so maybe it is just to pull me out of whatever is going on.I have never heard her mention IVIG or Plex. and maybe those are not options for me due to my high allergy problems or being seronegative. Plus I have many other Neurological problems so I really don't know, I am confused. I have an appointment for a second opinion but I do not want to upset my Neuro because I do like her and from what I read they are hard to find one you like. I am weak and tired and the thought of starting this process all over again with a whole team of doctors really isn't what I want to do. I need to get back to a somewhat decent place again of strength, I have my 8yr old to take care of. Any suggestions or thoughts?