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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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09-16-2008, 08:05 AM | #1 | ||
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I can't believe I never knew this forum existed but am very happy to have finally found it.
I was diagnosed with Occular Myastenia in 2003 when I was 14, and it eventually developed into full Myastenia Gravis. I am currently taking Mestinon, from 6 to 8 pills a day. I am about to start University but am very concerned with how I will keep up with the late nights of studying and long lectures when I struggled in High School. I mainly have vision problems, sore eyes, droopy eyelids, and bad sight. Is there anyone else who went through College/is going through college with MG? I just want to know how others handle it. |
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09-16-2008, 08:30 AM | #2 | ||
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I'm so happy I found this forum! I've never met someone else with MG and often feel frustrated and alone.
I've had MG for five years now (I was diagnosed when I was 14) and was wondering if there were any others who are/were in College with MG and how they deal/dealt with late night studying and other straining activities that College entails. (I made a thread but it didn't appear to have posted so sorry if this is a repeat!) |
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09-16-2008, 01:59 PM | #3 | |||
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This is a great site for support! Everyone has been so wonderful and kind......It is so sad that you have go through this so young, but the one good thing is that our disease can be conrolled, so hang in there girl!
I really don't know what else to say except my thoughts and prayers are with you. I was recently diagnosed (@ 34) so obviously I was NOT in college, but I am trying to raise my 16 r old son and take care of my hubby - not an easy task........ What meds r u on? How are u doing today? Hang in there and let us all know how you are! Take care! Erin
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Erin . |
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09-16-2008, 03:31 PM | #4 | ||
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Hi! Oh I remember the days!! I was diagnosed during university and looking back at photos etc I probably was suffering from occular MG throughout high school. I found that I was able to complete my work without too much trouble. I did an honours english degree so I spent a lot of time reading and typing on computers but as long as I took breaks I always finished my work on time. I had a prism fitted on my glasses for a little while, but I didn't notice much difference so I stopped wearing it. I usually just would shut one eye or wear a patch if my double vision got really bad.
I was pretty lucky that my MG was well controlled by mestinon throughout university - it's only the past two years that the mestinon has stopped helping and I've had to switch to other meds. I really hope and pray that Mestinon continues to work for you - the steriods are both a blessing and a curse, so stay off them while you can! Good luck in school and have fun when you can! Enjoy the good days! ~Kathy Quote:
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09-17-2008, 04:30 AM | #5 | ||
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Thank you both for your support.
Hearing that someone was successful in university while with MG gives me hope. I feel that both academically and socially MG has and will hinder me but I try to keep a positive attitude. I am about to leave my family to start school and I think I've had a "flare up" of MG or my MG has gotten worse. I read that emotional stress can make MG worsen but I dont feel completely distraught... I just hope it gets back to its more managable state. For about five years Ive taken Mestinon, for the past few years i take 6 to 8 pills a day...Im not sure how many mg that is but the pills are from Belgium not the states if that makes a difference. I find the Belgium pills to last longer in my system. Thank you again, it's nice to feel less alone (: |
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11-28-2008, 12:00 PM | #6 | ||
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hi evry1, i was only diagonsed 3 week now, however ive had it for nearly 2 years im on treatment and im going to have my thymus removed, ive had to drop out of college i just couldnt handle it, do you think ill be able to start my september next year?
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11-28-2008, 01:16 PM | #7 | |||
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I also had my thymus removed, but haven't gone into remission yet - howver, a girl in my group here in SA, had hers removed and has been in REMISSION for 11 wonderful years!!!!
You may be one of the lucky ones! Keep your hopes up! Just remember to take it easy and not push yourself too hard (something I struggle with every day).................. Take care! Erin
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11-28-2008, 01:34 PM | #8 | ||
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Hi and welcome!
Now that you have been diagnosed you will probably feel better very soon. It'll take a bit of time to sort out your medications and find out what will work for you, but there is a good chance you will be able to return to school and finish your degree. I've heard a lot of people found that going part time was less stressful, but I went to University AND worked fulltime with my MG and didn't have many problems. I did have to watch my meds and rest myself regularly but it was important to me to finish my degree. I didn't spend much time going out and drinking with my friends though - school was just more important. I still work fulltime and leave a fairly "normal" life! In another post you asked about glasses - I wear glasses and did for a time use a prisim. I didn't feel it helped so I stopped using it. My glasses do a bit though, and if nothing else I find they act a bit like a mask when my eyes get "wonky". I need to go and get a new prescription soon - I've been procrastinating for a long time! Take care of yourself and keep in touch! ~Kathy |
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