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...
Hello,
My story is really long but I'll try to make it short lol.
So basically my symptoms started around mid October, I remember walking and my legs suddenly gave up. I brushed it off because I thought it was just lack of exercise. Then over the next few months the other symptoms started showing. By November I couldn't lift my arms (I couldn't even take my shirt of or tie my hair). By the last week of December I had a cold for a few days and I went on an 8 hour trip with my friends when I got better. During our trip I realized the weakness of my arms had gotten worse and I had a hard time eating, I hardly ate anything. I also had trouble speaking and my friends and I thought that it was just due to my cold or something.
When I got back I told my parents and they took me to the ER, it was New Years Eve so the doctor's offices were closed. The doctors asked me some questions and took my blood to check my potassium. After waiting for hours they couldn't come up with anything (I was so pissed lol) So my parents took me home and I didn't have a choice but to spend New Years in bed.
In January my mom made me see a physical therapist doctor. She said that I need to have an EMG and we should come back when we have the results.
Then my mom got hold of an acupuncturist. He made some tests on me and said that what was happening to me was due to my toxic diet (I'm a college student so my diet is literally coffee and junk food lol). I was kinda relieved because i thought I had Multiple Sclerosis. He prescribed me a fruits and vegetables diet and I would meet with him once a week for sessions and we forgot about the EMG.
After 2 weeks I started feeling better so I thought I was okay, but my symptoms suddenly came back after a few days, and they actually got worse. So my parents decided to take me to the hosptial to have the EMG. The EMG results said that I had myopathy and that I should be taken to a neuro.
Around February (valentine's to be exact) my symptoms took a turn for the worse, I had trouble breathing. My parents took me to the ER again but they couldn't give me oxygen because my levels were okay. So in short they really couldn't do anything to me since they didn't know what was wrong. One doctor mentioned mg and said that I should really be taken to a neuro.
After a week we went to a neuro. He took one look at me, asked me if i could eat, if i had double vision, and if i could talk. After 10 minutes he diagnosed me with MG and ordered that I had to be confined immediately. We went home for my things and came back to the hospital. They had to redo my EMG and the results showed MG and myopathy. I was confined on Monday and I got discharged on Friday.
So it's been over a month since i've been diagnosed. I'm on 60gm of mestinon, 4 times a day. 40gm of prednisone (we're aiming for 50gm) and I'm going to have a transsternal thymectomy in 3 weeks. I had a ct scan and I don't have thymoma. I had an acetylcholine receptor antibody test and my antibody count is way over the roof. My neuro said that the chances of me getting better if i had a thymectomy is really good because my antibody count is so high.
Anyway long story short I was kinda pissed because I've been suffering for months when there was a cure just around the corner haha. I should have went to a neuro sooner. Also I'm terribly scared of the thymectomy, I've never had an operation before but if it means getting better then i'll take it.
My story is really long but I'll try to make it short lol.
So basically my symptoms started around mid October, I remember walking and my legs suddenly gave up. I brushed it off because I thought it was just lack of exercise. Then over the next few months the other symptoms started showing. By November I couldn't lift my arms (I couldn't even take my shirt of or tie my hair). By the last week of December I had a cold for a few days and I went on an 8 hour trip with my friends when I got better. During our trip I realized the weakness of my arms had gotten worse and I had a hard time eating, I hardly ate anything. I also had trouble speaking and my friends and I thought that it was just due to my cold or something.
When I got back I told my parents and they took me to the ER, it was New Years Eve so the doctor's offices were closed. The doctors asked me some questions and took my blood to check my potassium. After waiting for hours they couldn't come up with anything (I was so pissed lol) So my parents took me home and I didn't have a choice but to spend New Years in bed.
In January my mom made me see a physical therapist doctor. She said that I need to have an EMG and we should come back when we have the results.
Then my mom got hold of an acupuncturist. He made some tests on me and said that what was happening to me was due to my toxic diet (I'm a college student so my diet is literally coffee and junk food lol). I was kinda relieved because i thought I had Multiple Sclerosis. He prescribed me a fruits and vegetables diet and I would meet with him once a week for sessions and we forgot about the EMG.
After 2 weeks I started feeling better so I thought I was okay, but my symptoms suddenly came back after a few days, and they actually got worse. So my parents decided to take me to the hosptial to have the EMG. The EMG results said that I had myopathy and that I should be taken to a neuro.
Around February (valentine's to be exact) my symptoms took a turn for the worse, I had trouble breathing. My parents took me to the ER again but they couldn't give me oxygen because my levels were okay. So in short they really couldn't do anything to me since they didn't know what was wrong. One doctor mentioned mg and said that I should really be taken to a neuro.
After a week we went to a neuro. He took one look at me, asked me if i could eat, if i had double vision, and if i could talk. After 10 minutes he diagnosed me with MG and ordered that I had to be confined immediately. We went home for my things and came back to the hospital. They had to redo my EMG and the results showed MG and myopathy. I was confined on Monday and I got discharged on Friday.
So it's been over a month since i've been diagnosed. I'm on 60gm of mestinon, 4 times a day. 40gm of prednisone (we're aiming for 50gm) and I'm going to have a transsternal thymectomy in 3 weeks. I had a ct scan and I don't have thymoma. I had an acetylcholine receptor antibody test and my antibody count is way over the roof. My neuro said that the chances of me getting better if i had a thymectomy is really good because my antibody count is so high.
Anyway long story short I was kinda pissed because I've been suffering for months when there was a cure just around the corner haha. I should have went to a neuro sooner. Also I'm terribly scared of the thymectomy, I've never had an operation before but if it means getting better then i'll take it.
There are many members here that have had the same surgery you are having and from thier stories, things went well. I have not had a thymectomy (yet) As with any surgery prepare ahead of time for some downtime so you can heal, also be sure to talk with your surgeon and anesthesiologist about any fears or concerns you have. Of course don't be a hero afterwards, if you hurting let your nurse know and tthey will make you comfortable. Remember we heal slower when we don't rest and are fighting pain.
You are young and that will help you get over the surgery quickly and of course I hope that the surgery will help you minimize the MG symptoms. While many see a significant improvement, there is the possibility that you will still deal with some symptoms in the long run. It does sound like you are on the right path of treatments and I'm sure you will do well.
Best of wishes and be sure to let us know how you are doing
Take care Megan
Joe
I didn't have a thymoma, but a very large thymus.
You mentioned that you improved for a little after the acupuncturist. I'm not sure why that happens, but I saw several different doctors before diagnoses, one said sinus problem, one said lazy eye & each time I would improve for about a week. It was my Aunt who took me to a ears, nose & throat doctor. He listened to me, left the room & came back with appointment at a Univercity hospital. I was diagnosed there with what they call a tensilon test. My understanding is most don't use this anymore.
As for your thymectomy you will do great. It was so worth it.
Welcome to the group
The surgery was really easy for me. I was only in the hospital for 2 days . I was so much better after a year after the surgery.
You will be ok. It will be a journey and I am so so sorry for you.
It is very difficult.
Please feel free to come here.
I hope to give you comfort for the surgery.
Fear was my worse enemy in the beginning. Fear is really worse than the disease itself. It is easy for me to tell you to enjoy the ride.
Worry and fear are really the worse part. Please do your best to look for anything good. Look for it because it is right in front of you.
It is defiantly easy for me to say now because I have already walked down the rough road and reached the sunlight at the end of the road.
I hope it all goes well for you! keep us updated.
You have a great attitude going in, and that is a wonderful thing to have!
Good luck and welcome! ~joe
I was not a candidate for a thyme tommy, can't help you there.
Can't add anything to your discussion, or to the posts from everybody else, a gray group of helpful people here.
Will watch for your updates! Ross
Thank you! Thymectomy seemed to help the majority of people who have had it so I'm crossing my fingers for a good outcome :P Recovery time is probably going to be the hardest time for me because I'm a very energetic person and I cannot be still,I always have to be somewhere lol.
You were so young when you were diagnosed! And wow, 5 years remission that's a long time.
I did, I don't know why. I was still weak but I improved a bit so I believed that it was really my diet that was causing the weakness. Then when it came back my parents decided that nope, this is different we need a different doctor.
Thank you! May I ask how long did you wait to feel the effects of thymectomy after the surgery?
I'm also sorry to hear that you're in the MG world too. But it's okay, us newbies can help each other out :D
cheers
I'd like to thank you for your very inspiring message. My life now is basically fearing my upcoming surgery and worrying about my future (I have basically planned my entire year but when I was suddenly diagnosed it was like everything i planned came crashing down)
People like you and groups like these are the good things I need in my life right now :)
Thank you so much for your support
Yes! Mestinon is like a wonder drug lol, it made me really better. The prednisone also helped tone down the mestinon (although I hate the side effects)
Thank you! i'll be sure to communicate well with the nurses. I kinda have a big ego wherein I don't want to ask for help but yeah, I guess I have to change that.
It's great to hear that your working full time again! 9 months is a long time but it was surely worth it. I hope I don't get discouraged when I don't recover quickly.
really?? I was never taken to a psychiatrist! But my parents did ask me if I was depressed or something.
Thank you for your support!