My MG

By The Brit

1 min read

I was lucky enough to be diagnosed with ocular mg in the early stages in 2006 and had my thymus removed. Put on cellcept (allergic to other meds) and steroids. Put on lots of weight because of steroids. Now very happy to say no steroids, low cellcept and I have been in remission for the last 3 years.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Myasthenia-Gravis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

JimW Member
I have been taking Mestinon for about 30 years. The side effects of diarrhea can be severe and uncomfortable, to say the least. Every time I take Mestinon, I also take 2 1MG tablets of Glycopyrrolate. This combats the side effects in most cases. Ask your doctor about this. I tried to wean myself off and the side effects of the Mestinon came back immediately. Try it, you may like it. I had MG for almost 10 years before getting the definitive diagnosis. I have been very lucky that several Mestinon doses a day keeps the symptoms under control. I still occasionally get very fatigued with weakness in my arms and legs, but on the bright side it has been a long time since I have had double vision. I was experiencing double vision and muscle weakness for my last 10 years in the Army, I do not feel they wanted to diagnose MG as it meant immediate medical retirement. I was finally diagnosed at a VA facility in 1991, after I retired, and get disability anyway. I learned to live with it, and feel very fortunate it is not more severe.
1. kaitlynsutton Community Admin
 <inline-mention username="JimW" user-id="4821586"/> Hi there, thank you so much for sharing your MG story with us. I am so sorry to hear it took almost a decade for you to get a proper diagnosis but I am glad to hear you have learned, over time, how to live with it. Wishing you a gentle day today. - Kaitlyn (Team Member)
EveningSkye Member
What makes me C R A Z Y is when people who have no idea what MG is, tell you: 1. You are getting old 2. Just admit you're getting old 3. You're just looking for attention 4. If you'd get out and exercise more, you'd be fine. 5. If you don't use it, you'll use it. My standard answer anymore is that I think my neurologist would LOVE to talk to you about this as you "seem" to know so much more than she does about this very rare disease. The neuromuscular surgeon would probably benefit with your vast knowledge about this disease. Now, the person says to me, so what do you have? I will tell them, MG. I NEVER HEARD OF THAT, BUT YOU ARE JUST LAZY AND A HYPOCHONDRIAC. 
1. lauren-ruffalo Community Admin
 Hi <inline-mention username="EveningSkye" user-id="4562742"/>, what you are describing sounds SO frustrating. I completely understand why this drives you crazy. The comments you have heard from others sound a lot like what our community member, Zach, describes in his article: <a href='https://myasthenia-gravis.com/living/avoid-saying' target='_blank'>https://myasthenia-gravis.com/living/avoid-saying</a> In case you have not seen this, I wanted to pass it along. Let me know what you think. Hugs, Lauren (Myasthenia-Gravis.com Team)
CommunityMember439440 Member
I am so lucky that I have gone into remission and have stayed there for quite a long time. I wish that everyone who suffers with MG could go into remission too. There are so many people who have no idea what MG is and how it can restrict you.
1. Jodi Enders Moderator & Contributor
 <inline-mention username="CommunityMember439440" user-id="4734920"/> We are thrilled to hear that! - Jodi, Team Member
Jodi Enders Moderator & Contributor
<inline-mention username="The Brit" user-id="4181927"/> Hey! How have you been doing over the past year? Is your MG still in remission? Sending good thoughts your way! - Jodi, Team Member
1. CommunityMember439440 Member
 <inline-mention username="Jodi Enders" user-id="4496596"/> Thanks for asking yes I am still on remission and I think when I see my neurologist in August he will take me off my medication completely, he has been weaning me down for the last couple of years, I only take half a tablet each day now.
2. Jodi Enders Moderator & Contributor
 <inline-mention username="CommunityMember439440" user-id="4734920"/> Great update! - Jodi, Team Member
Jessica Liao Moderator
Hi <inline-mention username="The Brit" user-id="4181927"/>, thank you for sharing your story. So glad you found a treatment that was effective for you and are living in remission for three years--that's amazing! I got Rituxan in February and have been in remission since May. I have tapered from 60mg to 1mg of prednisone and can't wait to be done with it! Living with all of the symptoms of this disease for two years, it's been amazing having my life back. Wishing you the best! - Jessica (Myasthenia-Gravis.com Team)
Sanjana Member
<inline-mention username="The Brit" user-id="4181927"/> I was diagnosed in last year November.... So m taking steriod since 8 months... Ofcourse weight gain, our body has changed ,everypart of our body .. my neurologist docs tapper my steriod .... Added cellcept since two months .... But it's not end here ... I m having symptoms of hypokalemia now 
1. Sally Farrier Moderator & Contributor
 <inline-mention username="Sanjana" user-id="4176790"/> I also have gained weight like that!! just about the same as you actually!! I have not started tapering from the prednisone yet. I will in September. Then hopefully my weight will start to go down to the 58 kg I have always been. I am truly sorry to hear you are having symptoms of hypokalemia. Have you been able to get some extra potassium into your body to help with that? We really do care here!! Sally Farrier(myasthenia-gravis.com team member)
2. CommunityMember439440 Member
 <inline-mention username="Sanjana" user-id="4176790"/> sorry that you are not doing too well prayers go out to you