Quote:
Originally Posted by plmonica
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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I have no insight for you hun but know your not alone! What you are going through is what I went through not too long ago. Unfortunately for me, I only got the IVIG and was realeased into an acute rehab center after 8 days in the hospital. They pushed me way too hard at the rehab center and ended up back in the hospital for another round of IVIG and they decided to start me on low dose of steroids. Unlike you they didn't cath me, instead they used a lift to get me off the bed and get me over a comode so I could do my business (very humiliating but humbling). Needless to say I ended up back in another rehab center after 6 days in the hospital. They FINALLY started me on Mestinon and after almost 2 weeks there I got discharged home. I've been home almost 3 weeks and things are still crappy for me. I'm still using a wheel chair since I seem to use all the energy I get when I get it. I shouldn't even be typing this let alone be on the computer since that alone is enough to make me miserable.
Anyway I'm not typing this to scare you, just to let you know your not alone! The reason things may be so bad for me is that I have another thing going on. I see a Rheumatologist in a week. My neuro doesn't want to mess with my medication until AFTER I see the Rheumatologist.
I really hope for your sake that things start to improve for you and that you don't end up where I am!
The medications they have you on could be making things worse but once you finish the IVIG and give it some time, you should start feeling much better. Patience's is something you are going to have to get more off. It's hard being so bad off, it's frustrating and at time's it's pure hell. BUT remember it could always be worse. I know people hate that saying but it's true. I never thought I'd see the light at the end of the tunnel but eventually I did. I knew it was going to be a bumpy road, but didn't realize just how bumpy it was going to be for me. Hopefully for yourself, you only have MG to deal with. That's bad enough! Good luck, hugs and prayers!!!