I know exactly what you mean about pushing yourself and running from this damned disease and finally collapsing. I'm the "push through it" kind of person and I have finally learned that with MG it just doesn't work. Now I give in to the fatigue and rest when my body starts the downward spiral. But not without sadness, frustration and bitterness that I cannot function.
My doctors have me on Cellcept instead of Imuran. I don't completely know the difference but you might ask about it. So far - no hair has fallen out.
I just got out of the ICU with an MG crisis and was on 5 days of IVIG. They didn't say how long it lasts and I'm wondering if I will need it again soon. Have they told you?
I wish I could fix this. But know that you are not alone. I know how you feel and I know that it SUCKS!
Quote:
Originally Posted by cricket001
Okay...finally coming to terms with this disease! I can't run from it anymore...I have pushed myself and pushed myself....thinking this would just go away...but it has caught up with me...regardless if I ignore it...
My doc has been so patient with me and is soooo wonderful! He has run every test to double check that it is not something else..like lyme disease etc...because my antibodies test.. and EMG on arms and face test were fine...and thalmus not enlarged...but did have an abnormal EMG test on legs...I apparently have neuropathy on my calves and feet...numbness is causing me to fall and have "drunken walk"...I guess??? Double vision is present...and droopy left eye...difficulty swallowing too...
I was admitted friday for my first IVIG infusion--doctor is keeping me in hospital for a 3 day infusion (4 hour infusion each day)...
Also started me on Imuron (sp?)....the side effects scare me....does this work? doc said it would take a month...but drug sheet said my hair would fall out and I would have a weaken immune system...and could be at risk for some cancers...
I have been taking mestinon 90 mg 3x day and 180 timespan....
I am scared to death...It took 4 tries to get my iv..it blew right after the infusion was completed...so they waited until today's infusion to restart....after 2 more attempts--they got it and my 2nd dose of IVIG is infusing now...
The IVs hurt sooooo bad.  .....how do you all handle this? the doc said that after this...I would need IVIG about every 3-4 weeks outpatient!!!
Sorry for the LOONG post....but I am so worried! He told me to go two doors down and see the patient...because she has severe MG...I am scared to see her!  |