Originally Posted by djvallejo

My husband had his thymectomy 1 yr ago. Like you, he mostly had vision problems prior to surgery (droopy lids & DV) and was taking only mestinon. His surgeon told us that sometimes surgery can cause the antibodies to release into his system causing his MG to worsen before it got better & that was definitely the case with him. His vision was great for about 4-8 wks (due to the plasma transfers prior to & after surgery) and then we saw it get bad again along with other, generalized symptoms appearing. It got a little scary so we went to his neuro who recommended plasmapheris which was done in April. We opted against any pred, cellcept or imuran for now - don't really like meds and the side-effects that go with them. He had alot of improvement from the plasma transfer, but eye issues continued with some relief. He also has quite a bit of jaw strength issues that did not improve much. Last month he had 3 rounds of IVIG to see if he could get some vision & jaw improvement (other symptoms are still manageable) but saw little improvement. He has an appt next month with his neuro to see what we should try next. All in all, he is MUCH better 1 yr post-op but it is still very frustrating living with this crazy disease and the limitations that come with it.

I'm with Annie - you have every right to see your neuro not just the FNP. We have a standing appt to see my husband's every 3 mos and when he was having so much difficulty this past spring, I got him it within a week. Normally it takes 4 wks to get an appt. Keep pushing for what you need! I hope hearing someone else's story helps you. Good luck on your journey through this craziness! Alison