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 69 yr old male, who was diagnosed yesterday with Myasthenia Gravis. Went to emergency room last week to make sure that I had not had a stroke. kept slurring my speech around meals and when talking a lot. Cat Scan and MRI showed nothing. A blood test for acetacholine receptors came back elevated. I was referred to a neurologist that confirmed diagnosis. She place me on 60mg of Mestanon (Pyridostigmine) 3 x per day 1/2 to one tablet and Glycopyrrolate 1Mg as needed.
She scheduled me for a CT of the chest and a nerve study on March 5..
I hope to learn a lot in this forum.
She scheduled me for a CT of the chest and a nerve study on March 5..
I hope to learn a lot in this forum.
Sorry you have to go through this. It can be very scary at first. Feel free to share feelings and or ask questions.
This group saved me emotionally.
I echo what Ann and Jacki said.....this group has been a lifesaver for me.....always willing to encourage, share information and experiences, and most importantly....the folks here will listen and can understand what you're going through.....and that is priceless!
Tamara
So glad you got a quick diagnosis. Good luck !
Annette
A lot of people unintentionally wear themselves out with activity when they first get on the mestinon. Don't overdo things if the mestinon does work, and think you are "fixed."
Take it easy right now -- this is a perilous time, unfortunately. But you'll do alright. But if you have difficulty breathing don't be shy about going to the emergency room!
~Joe
I am a male about the same age, and got diagnosed in 2012 with the same antibody test and started treatment of Mestinon then. I rapidly got worse, had trouble breathing (a crisis) and had to take about double to triple the Mestinon you are taking and started prednisone. With prednisone I got the disease under control so my MG symptoms were pretty much gone in 6 months (at 60 mg or prednisone per day).
Then I spent 6 months tapering off the prednisone and when I got completely off of it, the MG was completely gone. About 15% of us go into a remission where we don't need medicine for varying periods of time. I have been in remission for 21 months now and normal.
For most folks the standard treatment works to get control of the disease and our lives back OK--prednisone and mestinon. Of course, prednisone has problems too when we take it at high doses needed initially to get control.
If you read some of the major medical websites like Mayo, WebMD, or the Myasthenia Gravis Foundation you can find a great deal of information about MG. Most doctors are not knowledgeable, so a neurologist who treats many MG patients is important in your future.
If you have a positive antibody test, then the need for the "nerve study" -- an EMG test for nerve fatigue is really uncertain, as you already have an MG diagnosis that is much more definitive.
You can search this website to find out what people have experienced.
Good Luck
Joe
The quickest treatments if additional treatment is necessary are prednisone or one of two types of direct blood alteration.
IVIG is adding blood antigens from others and PLEX is "cleaning" the blood of those. Both are expensive and may require hospitalization and must be repeated every few weeks or months. We have to meet conditions of severity for insurance to cover them
($15-20,000 per treatment cost for the insurance company)
Prednisone suppresses the bad antibodies that attack the nerve to muscle junction. It is inexpensive and has been the major initial treatment for MG for the past 50 years or so. Not everyone tolerates it.
IVIG has been gaining rapidly for initial treatment when the condition is severe. It can help us get through until some longer term immune system suppressing drug begins to work--several major ones.
I spent a great deal of time reading about MG online, first at the Myasthenia Gravis Foundation website and then at the various major hospital/clinic sites. Online, there are many sites of uncertain value and often just as a front to push some product, so be selective.
http://www.myasthenia.org/ Is the starting place
Good Luck
Dee
I'm glad you got a quick diagnosis and treatment started.
I had stroke like symptoms too and hubby would take me to the ER. It took 4 years to get a diagnosis!
Mestinon is my best friend on earth. I always take it with food since it bothered me on an empty stomach.
Hope the rest of your testing goes well.
Take care
Carly
It was discovered when they did the EMG all other tests came back negative, I knew something more than just old age (61) was going on, I hurt trying to stand up, had surgery last January for Ptosis in my eye (surgery did nothing for it), my voice changes at times and I get hoarse, and have major fatigue.
I decided that no matter the outcome to all of this I would just deal with it and go on with my life, I have since decided that this is bigger than I thought and I need help understanding it and not from a doctor that sees it all day and acts like it is nothing.
My local neurologist doesn't think I have M.G., the doctors in Portland Oregon at Oregon Health Science University Hospital are the ones that have diagnosed this. This hospital is 3 hours from me and I plan on driving it when need be since they are the ones that are willing to help me get through this.
Any insight to what is to may or may not come would be welcome, and thank you all in advance.