MG Awareness Month Forum!
What do you wish more people understood about Myasthenia Gravis? Whether it's about symptoms, treatment, daily challenges, or common misconceptions, share your thoughts below.
I have recently been diagnosed. It seems really hard to find a neuro near me.
Hi
have you had any advancements in your search? I shared an article, which includes a link to a search tool to find a specialist here - https://myasthenia-gravis.com/living/finding-doctor-specialists. I hope this is helpful. Wishing you well. -Jessica (Team Member)
That I didn't ask to have this condition but I have it, it's apart of my life and it just be managed and respected and but judged and if you judge me the hell with you and that goes for anyone. This is not an easy condition that I wouldn't wish on the devil and I've met a few.
Hello and welcome to our community! We understand the burden MG can place on your life, and we want you to know that we recognize your challenges. You are not alone, and we are here to offer our support. I believe you may find some comfort in the following articles: https://myasthenia-gravis.com/living/avoid-saying, https://myasthenia-gravis.com/living/rediscovering-normal, https://myasthenia-gravis.com/myths, https://myasthenia-gravis.com/caregiver/comment-responses, https://myasthenia-gravis.com/living/choosing-compassion - Jodi, Team Member
I was diagnosed in February 2024. It has been a challenge and I am learning what I can, cannot do and trying to explain/educate others about MG.
Thank you for sharing that! I, too, have never taken a lot of meds. Currently my Mestinon the script says "as needed", but it seems that many of the people on this forum may be taking this med all the time with or without symptoms. Seems like that is a question I will need tog et answered by my Neuro when I see her. It is certainly a med you need to control yourself as there is a lot of negative side effects if taken like regular meds. Talk to your doctor but he cannot tell you when you need it. I have had MG for over 55 years and I am very sensitive to Mestinon and over using it will cause muscle cramps (legs, neck, jaw and toes for me), eye flickering and other effects that people often mistake for MG.
i can say my doc is superb brilliant!
i start with 3days straight easy chocking even myown Saliva...
my eyes like cant focus while reading
he advise me on what to do and get direct scoping since im on rehab during MS treatment.
scoping normal n my condition back to normal.then 1 mnth b4 diagnosed, my left eye droping abit. im not comfortable. i call it sad eye. i finish MS treatment at rehab n bck to c him.
he do test for MG by blood. then positive!
he do also EMG he said! yes! positive!
its rare he said cuz not easy to get combination desease of MS and MG at the same timein malaysia, yes its consider under rare disease.... it's not easy to find patient with these disease I've been using lightly tinted prism lenses for 40 years and they have been a savior. I always have double vision accept looking down but I've learned over the years to move my head and not my eyes. I'll fall over without the prism lenses. lol The tint also helps reduce fatigue especially around florescent lighting. Thankfully its being done away with.
