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.
thyme tommy! lol! Thank you! I'll be sure to update everyone once my thymectomy is over :D
About thymectomy: it is really scary, but I encourage you to do it! My results have been great, and I feel like, even if I still have symptoms, I'm under control now, and I have so much of my life back. I just had mine this past summer, so it's all fresh in my mind--if you have any questions at all, please feel free to ask!