Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I am a new to this blog and this is my first post. I was diagnosed with MG in 2008 and had a thymectomy later that year. From that time until the present I have at some point been treated with Mestinon, Prednisone, Cyclosorine and Imuran. Presently per day I take 360mg Mestinon, 5 mg Prednisone and 250mg of Imuran. I should also mention that during the past few years I have also seen an "Alternative Medicine" MD. I have had food allergy tests, heavy metal tests, acupuncture, parasite cleansing, I have had all of my root canals removed, no wheat, no dairy etc. etc.
I have had mostly ocular symptoms (pstosis and diplopia) which were well controlled until late 2012. After a trip to Hawaii, I developed a chronic right eye infection that recurred several times, lasted on and off for a year and was treated by Prednisone drops, Ocular pressure drops and antibiotic drops.
Since that time (2012) I had constant right eye ptosis (could not open at all and wore an eyepatch) and I slowly lost most of the muscle control in my right eye resulting in constant diplopia. Recently and mysteriously, after two years the ptosis completely cleared up and my right eye opened! Unfortunately, due to muscle atrophy I have very limited movement in this eye. A few weeks later the ptosis hit my left (opposite) eye and I cannot open it without using tape.
Now the movement in my left eye has started to deteriorate meaning that those muscles are starting to weaken. I went to the Mayo Clinic in Rochester, MN in early December 2014. The Neurologist there suggested IVIG therapy which my Neurologist had never mentioned to me.
Just 2 days ago (1/12/15), I was hospitalized and received IV infusion with Gamunex-C Globulin, 100 grams per day for 2 days for a total of 200 grams. Now I am just waiting to see if IVIG will lessen my ocular symptoms. I understand that IVIG does not work for everybody.
I wanted to ask those that have had IVIG, how long does it take after infusion until you see a lessening of symptoms? Also, I would like to ask those with treatment resistant ocular symptoms that have had IVIG: How effective has IVIG been with reducing your ocular symptoms?
Thanks, Dave
I have had mostly ocular symptoms (pstosis and diplopia) which were well controlled until late 2012. After a trip to Hawaii, I developed a chronic right eye infection that recurred several times, lasted on and off for a year and was treated by Prednisone drops, Ocular pressure drops and antibiotic drops.
Since that time (2012) I had constant right eye ptosis (could not open at all and wore an eyepatch) and I slowly lost most of the muscle control in my right eye resulting in constant diplopia. Recently and mysteriously, after two years the ptosis completely cleared up and my right eye opened! Unfortunately, due to muscle atrophy I have very limited movement in this eye. A few weeks later the ptosis hit my left (opposite) eye and I cannot open it without using tape.
Now the movement in my left eye has started to deteriorate meaning that those muscles are starting to weaken. I went to the Mayo Clinic in Rochester, MN in early December 2014. The Neurologist there suggested IVIG therapy which my Neurologist had never mentioned to me.
Just 2 days ago (1/12/15), I was hospitalized and received IV infusion with Gamunex-C Globulin, 100 grams per day for 2 days for a total of 200 grams. Now I am just waiting to see if IVIG will lessen my ocular symptoms. I understand that IVIG does not work for everybody.
I wanted to ask those that have had IVIG, how long does it take after infusion until you see a lessening of symptoms? Also, I would like to ask those with treatment resistant ocular symptoms that have had IVIG: How effective has IVIG been with reducing your ocular symptoms?
Thanks, Dave
Here's a recent thread that you may want to read.
http://www.dailystrength.org/c/Myasthenia_Gravis/forum/19978359-ocular-myasthenia-gravis
Thanks for the link. I am new to the group and did not see this prior topic. I am 2 days post IVIG and today my left eye opened up half way, which to me is a minor miracle! I am hoping for the best but unsure how the effects of IVIG will play out. I appreciate your guiding me to this thread.
Dave
But I do need to add that I went to an alternative medicine person whom we had success with my daughter and food allergies.
But they gave me some drops to help my immune system.....big mistake....it triggered my immune system which we with MG definitely don't need. I was just too inexperienced to know that. I think it triggered a major crisis. So be careful with anyone other than an experienced neuro.