Gabe! Thanks so much for sharing your story! MG is such a tricky disease! For me, it took being so weak that I wasn't able to breathe on 3 different occasions to finally see my dr (who referred me to my neuro) to be diagnosed.
By the time I was finally diagnosed, my antibodies were @ 600 - really high (according to my neuro)....................It was the scariest time of my life. I truly thought I was going nuts!
I hadn't even HEARD of MG @ the time..............
I thought it was so funny that you told me to drink lots of fluids after IV IG, cuz' when I get home, I drink about 30 oz. of milk/juice/whatever and am parched! Granted, I still "drink" with a spoon (palette issues) but am able to swallow - golly that feels good!!!!!
I am thinking about having a permanent port put in - I think it will really help with future IV IG. I have track marks up and down my arms, and scratches from the last round of PICC line placement..........
I hope you don't mind my asking, but how old are you? I have heard that MG usually affects women between 20-40 and men over 60 - is that true?
Do you have night sweats? Now that my prednisone is back @ 20 mgs, I wake up just miserable!
I'm going back in all this week for more rounds of IV IG, and feel pretty dran good today!!!!
Take care!
Erin
Quote:
Originally Posted by Gabe
Hi Erin -
In April of 2004 I was having a great deal of difficulty swallowing - had Optic Neuritis in my right eye the previous October - Went to my primary doctor and was referred for MRI's to rule out MS - MRIs were normal so she did more tests. I was diagnosed by an antibody test by my primary doctor in June of 2004 she sent me to a neurologist who confirmed the diagnosis with another series of antibody tests but then sent me to a specialist at the University of MN because he was concerned that i might have ALS or MS rather than Myasthenia Gravis. He put me on Prednisone and Mestinon in July of 2004 and I saw the neurologist at the U in October of 2004. He did some more blood work and a Single Fiber EMG but I was on Prednisone and Mestinon at the time so all of the tests were normal. He then admitted me and took me off the meds for three days and repeated the tests - the SFEMG was wacky but not conclusive.
My regular neurologist said that the Prednisone would have still been in my system (was on 60mg a day at the time) so he wasn't happy with the U of M findings. He referred me to Mayo Clinic - took a long time to get in but was finally officially diagnosed by the neurologist at Mayo Clinic in January of 2006. I had a thymectomy in the Spring of 2006. Was on Imuran and Prednisone but apparently had an inability to metabolize it and my liver functions were off the charts - switched to CellCept a year ago in November and take 3000mg a day - I am off the Prednisone because I developed Osteoporosis and my blood sugars and cholesterol were elevated. I started getting IVIG in the Spring of 2006 and have been receiving it every 2-4 weeks for the most part. My veins couldn't take it - IVIG is very hard on your veins.
The port is about the size of a quarter. they made a slit about 1 inch long to put it in. Compared to my thymectomy scar it is nothing - in fact the scar from my chest tube from the thymectomy is bigger.
Gabe
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