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...
Forgive me, I'm new to this and I feel like I've already been thru the ringer leading up to the MG diagnosis and I'm just worn at this point.
Started out with early and late day double vision a year ago, droopy eyelid for a few years that comes and goes and constant double vision starting in May of 2012. Neuros were leaning towards a MG diagnosis when something was found wrong with my brain (called Chiari Malformation) that was believed to be the cause of all my symptoms. I also started getting numbness in my throat and get short of breath (can't take a full breath most of the time)
October I had decompression surgery for the Chiari and my symptoms only got better as I rested during recoperation, than were worse after I returned to work. And now my left side kinda drags as well.
Went to a neuro opto who was "inclined to say" I have MG, whether bloodwork agress or not and sent me back to my neuro for treatment. Examining my eyes and running some tests he does not believe the Chiari could have caused the double vision as it came to be.
Neuro started me on Cellcept with a month of prednisone. He says he prefers the Cellcept for treatment of MG.
I am so frustred with my symptoms. I am still working full time, I drive an hour each way to work (with an eye patch) stare at a computer all day and have three kids and a husband to come home too. I am worn out and just looking for some releif from these symptoms. I can't see!
So since Mestinon can work right away (so I hear) and Cellcept is good for longer term, do I need to request it or just keep waiting? Things are not getting any better yet. I see my neuro opthomologist in a week, but my neuro not for another six weeks.
Started out with early and late day double vision a year ago, droopy eyelid for a few years that comes and goes and constant double vision starting in May of 2012. Neuros were leaning towards a MG diagnosis when something was found wrong with my brain (called Chiari Malformation) that was believed to be the cause of all my symptoms. I also started getting numbness in my throat and get short of breath (can't take a full breath most of the time)
October I had decompression surgery for the Chiari and my symptoms only got better as I rested during recoperation, than were worse after I returned to work. And now my left side kinda drags as well.
Went to a neuro opto who was "inclined to say" I have MG, whether bloodwork agress or not and sent me back to my neuro for treatment. Examining my eyes and running some tests he does not believe the Chiari could have caused the double vision as it came to be.
Neuro started me on Cellcept with a month of prednisone. He says he prefers the Cellcept for treatment of MG.
I am so frustred with my symptoms. I am still working full time, I drive an hour each way to work (with an eye patch) stare at a computer all day and have three kids and a husband to come home too. I am worn out and just looking for some releif from these symptoms. I can't see!
So since Mestinon can work right away (so I hear) and Cellcept is good for longer term, do I need to request it or just keep waiting? Things are not getting any better yet. I see my neuro opthomologist in a week, but my neuro not for another six weeks.
Certainly should give it a try. For most of us with MG, it is a real boost for getting through each day as the longer term meds take over. Ask your doctor why he hasn't prescribed it. Tell him you know many other MG patients who use Mestinon (pyridostigmine).
Good Luck
I was on just mestinon for 6 months before they added prednisone and another 6 months before the Cellcept. A months after starting the CellCept my diplopia went away (unless I am really tired the the double vision comes back). Talk to your eye doc and see if prisim glasses help. They allowed me to drive when I had severe diplopia.
I would call your neuro's office and request it by phone. Tell him you have joined a support group for MG patients and it helps them
He should be embarrassed he hasn't prescribed it. I would look for a neuro who has MG patients. I would question your current neuro's abilities since he hasn't prescribed mestinon.
Take it easy girl......you may be over doing it.....big time. If you feel your breathing you better stop....WARNING
Ann
Please make sure you get some ASAP
Annette
However, the digestive side effects are a nuisance. So, if it works, you should know very soon, and if so, then taking the pills with food and over the counter loperimide helped me. Mestinon carried me for 5 months while waiting for prednisone to take effect. Then I didn't need the mestinon any more.