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Old 03-16-2015, 10:40 PM
plmonica plmonica is offline
Junior Member
 
Join Date: Jan 2015
Location: New Jersey
Posts: 14
8 yr Member
plmonica plmonica is offline
Junior Member
 
Join Date: Jan 2015
Location: New Jersey
Posts: 14
8 yr Member
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I'm in a very bad situation with my MG or whatever it is I have. Maybe Annie or somebody here has any idea. So like I was saying before I was admitted to the hospital on Friday and I started treatment for MG flare up, that's what they named it since I had no breathing problems. On Sunday I got worse and got moved from regular neuro unit to ICU. I got swallowing problems and couldn't take Mestinon so I have a feeding tube now. Was too weak to get up to the bathroom too so got catheter inserted. I'm on IVIG, steroids and Mestinon. Today was the worse day in my life..... That's how it started: woke up weak in the hospital, got my steroids in the IV, later got headache and nausea and that's when I got weak, actually I shouldn't call it weak, it felt like paralyzed from head to toes. Wasn't able to move at all as my body felt like somebody poured concrete on it and it was too heavy to move. Couldnt talk, my eyes were stuck on one object in the room and felt like I'm not blinking at all. That's when they got feeding tube and catheter inserted. I stayed like that with my body paralyzed until I got my dose of Mestinon and another IVIG. I'm Terrified!!! My doctor decided to do another EMG at the time when I couldn't move at all as she expected that we will get bad results. Guess what.... Test was inconclusive. I did the same test like 2 months ago in her office when my only symptoms at that time was weakness and it wasn't perfect. Now it was! I tested negative for ACH antibodies, don't have results from anti MUSK test yet, CT of thymus was negative too. They said they don't know what I have as I gave all the symptoms of MG but all the tests are negative. Do you think that meds that I'm taking for it could cause a reaction like this? I feel like I have a beast inside of me that wakes up every day to paralyze my body since we started treatment. Is that true that while on steroids you first get worse to get better later?? I'm praying that at least breathing will not fail me as I need to get out of this nightmare for my 2 year old son. Doctors that I have said they never seen such an severe attracts on MG. Btw they have been practicing for 20 years. Does anybody here have an idea what other than MG I may have??? I'm hoping that today was a breaking point in my therapy and I will start getting better tomorrow. I was better with my symptoms when I got admitted to the hospital than now when I'm doing the treatment. Please any ideas you have share them with me. I got strength back in my hands and fingers tonight so I'm typing it really quick as I don't know what's gonna happen in the next few hours. Thank you so much!!!!!! And sorry for a long post.
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