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...
Hi All,
My name is Shannon and I am a 22 year old female recently diagnosed with Myasthenia Gravis. As many of you should know it is quite devastating and has been an upward battle for the past four months. All while this was happening, I did in fact manage to finish my undergraduate degree and although I am sort of drowning in my MG, I try to take some time to be proud of myself.
I'm not too sure who will take the time to read this but hopefully someone does. I noticed ocular symptoms in about August 2012, not so much blurry vision but problems with my eyes adjusting to near or far objects. The second symptom i realized was my inability to 'smile' properly. I felt as though i was almost grimacing oppose to smiling, which is still to date one of my most bothersome symptoms. That also moved to me having difficulty presenting in school with my speech getting tired after a presentation. Later that moved to me having difficultly chewing food properly. The other other symptoms I experience is my arms and legs have a 'heavy' feeling sometimes as well.
In November my neurologist suspected that I had MG and i started taking Mestinon 60mg 3X daily. At first I thought wow this is making the world of difference. Then as many other experience, it was not enough treatment. I also switched my mestinon dose to 60mg 2X daily, with taking a 180mg time released pill at around 7pm. I recently (1 week ago) introduced prednisone to my medication as well. I am on 10mg of prednisone daily, and am hesitant to go any higher. My neuroligst wanted me to be on 20mg but obviously I wasn't ready for what comes along with that, so we settled for 10mg even if it isn't my best option.
My CT scan came back normal. My specialist believes that I should get the thymectomy although this has come back normal given my age and profile. I obviously want the least invasive procedure and have yet to talk to the surgeon yet. What does everyone think? Should I get the thymetomy? I am so eager to begin a career and start my life being fresh out of university and want this to get better so badly. I am not going to stop fighting obviously, but want the opinion of those who have experience with this.
Also, on January 8th (next week) i think the doctor wants to introduce Imuran to me. Lastly, my blood work tested positive for the antibody.
THANK YOU TO WHOEVER READ THIS. It really means the world to me.
My name is Shannon and I am a 22 year old female recently diagnosed with Myasthenia Gravis. As many of you should know it is quite devastating and has been an upward battle for the past four months. All while this was happening, I did in fact manage to finish my undergraduate degree and although I am sort of drowning in my MG, I try to take some time to be proud of myself.
I'm not too sure who will take the time to read this but hopefully someone does. I noticed ocular symptoms in about August 2012, not so much blurry vision but problems with my eyes adjusting to near or far objects. The second symptom i realized was my inability to 'smile' properly. I felt as though i was almost grimacing oppose to smiling, which is still to date one of my most bothersome symptoms. That also moved to me having difficulty presenting in school with my speech getting tired after a presentation. Later that moved to me having difficultly chewing food properly. The other other symptoms I experience is my arms and legs have a 'heavy' feeling sometimes as well.
In November my neurologist suspected that I had MG and i started taking Mestinon 60mg 3X daily. At first I thought wow this is making the world of difference. Then as many other experience, it was not enough treatment. I also switched my mestinon dose to 60mg 2X daily, with taking a 180mg time released pill at around 7pm. I recently (1 week ago) introduced prednisone to my medication as well. I am on 10mg of prednisone daily, and am hesitant to go any higher. My neuroligst wanted me to be on 20mg but obviously I wasn't ready for what comes along with that, so we settled for 10mg even if it isn't my best option.
My CT scan came back normal. My specialist believes that I should get the thymectomy although this has come back normal given my age and profile. I obviously want the least invasive procedure and have yet to talk to the surgeon yet. What does everyone think? Should I get the thymetomy? I am so eager to begin a career and start my life being fresh out of university and want this to get better so badly. I am not going to stop fighting obviously, but want the opinion of those who have experience with this.
Also, on January 8th (next week) i think the doctor wants to introduce Imuran to me. Lastly, my blood work tested positive for the antibody.
THANK YOU TO WHOEVER READ THIS. It really means the world to me.
I did IVIG to push MG back and I take Cellcept and Mestinon. Cellcept has helped me reduce the need for mestinon. I just have to avoid getting sick because I don't have much strength when I am sick.
Just know that whatever you decide, we will support your decision and we understand your concerns...WE GET IT
Peace,
Troy
Debbie
My doctor has told me i have myasthenia and has put me on treatment, the treatment i am on improves all my symptoms. But i am wondering if i should have my thymus glan removed i have done loads of research and having the thymus removed seems to get rid of all symptoms in most cases can any body help me choose where to go from here.
thank you
Please read all the posts on this thread, and may others in the forum, there are many opinions, I know you are undecided, but you are asking the same question as ShanAlis has asked here.
Hope you find the input you are looking for
Rgds
Christo