Originally Posted by plmonica

Hello, I'm sorry for not posting anything for a while but I just got discharged from the hospital 2 days ago after almost 2 weeks in ICU. I got so weak in the hospital that I was basically sleeping most of the day.

Annie,
Thank you for your last post with the suggestions.
My NJ neurologist teamed up with other specialty doctors- endocrinologist, oncologist/ hematologist, nose/throat specialist and GI doctor so they all can test me for other stuff like you suggested and they didn't find anything else so they kept the MG diagnosis. My neurologist after my severe attack on Monday March 16, stopped IVIG and stopped the steroids. She only kept me on Mestinon 3 x 90 mg. Then she told me that she never had a patient with MG that would have those I would call it "waves" of weakness and heaviness few times a day as per her MG doesn't fluctuate as rapidly over few minutes or hours. On top of that all MG tests are negative so we don't have confirmation it is MG. She even suggested it may be periodical paralysis just based on that one time attack in the hospital. She said she doesn't know what to treat me for anymore and she offered to arrange a transfer via ambulance to higher level hospital in NYC which is University Hospital and they have more resources there to help me. I got transferred and in the new hospital they reviewed my records and spoke to me about my symptoms and did standard neurological test and said they are 99.9% sure it's MG. I also have ptosis which made it easier I guess for them to determine if it's MG or not. They said it makes no sense to run new tests like EMG, bloodwork etc since I already received 3 full IVIG treatments so results of the tests wouldn't be accurate. The interesting part is that they lowered the dosage of Mestinon from 3 x 90 mg to 2 x 60 mg. I don't feel super because I'm very weak and tired but I feel much better on new lower dosage of mestinon than on the higher one. On the higher dosage my brain was not working, I felt completely out of what was happening around me, I had extreme twitches all over my body which felt like somebody is torturing me by touching me with electricity cables and I was shaking like I have Parkison's disease. When my husband asked the doctor in NJ before I was transfered to NY if that could be severe side effects from Mestinon she said absolutely not. We are new to this so with no experience who should we trust in if not doctors. To cut it somewhat short, I was released from NY hospital and one of the paragraphs on the discharge papers says I was over medicated and my body was toxicated by medication overdose. Obviously I didn't do it to myself at home, it's something that happened during the hospital stay. Now, when I think about it more, my NJ neurologist increased my Mestinon to 3 x 90 mg 5 days before I got to the hospital so I think that's when everything started. Even though I had no side effects from taking more Mestinon for those 5 days while at home, until the day 5 when I got admitted to the hospital due to extreme weakness where I wasn't able to walk. It's been a extremely difficult experience for me and my family but I hope it will get easier from this point.
Do you know anybody who tests negative for everything and still has MG?

Thank you for reading, sorry for very long post but I had to fill you in.