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, I was diagnosed with MG yesterday. Right now, i'm only experiencing double vision. I actually had a thymoma removed last year and thought that I had escaped MG. I don't know what to expect. I'm trying keep a positive outlook, but i'm really concerned. I don't know anyone else with this disease. I know everyone is different, but I'd love to hear how quickly symptoms progressed for other people. I'm 38 and single and just uncertain on how I'm going to handle this on my own.
Glad you are here. I hope you have a mild case. Sometimes different days will bring new interesting questions about your body and how it may be behaving. Rest, eat healthy, walk some and we all hope you stay strong. If you read my profile it tells how mine progressed but I am doing great now. We are all here for you. Be cautious of anything medical or dental that could trigger problems.
Ann
It seems to me that those who have rapid onset, also tend to have rapid progression. I have had MG symptoms for at least 40 years and have been actively trying to get diagnosed for 35 of them and my diagnosis is only recent, after I finally developed the eye signs that the texts say is how it first manifests. Lots of misinformation out there for the medical profession. Most of those of us here are struggling with diagnosis and/or treatment, that is why we need support, but there are those whose treatment goes much more smoothly and those who only develop the eye findings.
Welcome, there is a wealth of information and experience in this group, no need to feel alone, b.
Hugs, Cathy
Then I thought
"Well, this is a waste of my today" so hopefully I ended that.
Because they each had a had successful thymectomy years ago, their disease is stable and not bad so I thought it was always an inconvenience rather than anything else. So I had not realised that it could sometimes get pretty devastating until I read some histories here I discovered that would not necessarily be mild for everybody.
However it is important to keep in mind that for a lot of people that it can be managed with drugs so that the impact on life is a lot less. Very roughly once medication is established one third have few symptoms and lead a "normal" lifestyle, one third have to make significant adjustments but still keep going pretty well but unfortunately about a third are very badly effected indeed. There are also side effects of the medicaments but careful dosing can help there.
Keep thinking positively because that will make you adjust to everything without going into a panic like I did after reading some of the posts here. I would read them all though if I were you even if it takes days because they are immensely helpful and eventually let you put things into perspective. Importantly they let you know some first rate coping strategies to help you manage the disease whatever way it progresses. Perhaps more importantly there are a lot of very supportive people on the site and sometimes its just good to know there are people there who can understand.
Try and look on the positive side. Thymectomy works well in a lot of people, especially women under 40 so you can hope to be one of the lucky ones. Make sure you take the medication your neurologist recommends because prompt and proper medication can really help in a lot of cases and can sometimes stop the disease progressing.
Good luck.
Gwyn