I would call this forum an "Active Group". If you see a post that was originally begun say in the year 2011, the most recent post may be yesterday, in August 2017. That's because someone was researching some key words and thought that the subject matter should be "re-visited" (for lack of a better word).

This is the only place I go to. If there are other places on the web, I would be interested in knowing where they are. Always need more information about MG.

Mdjunction has a myasthenia group, as well as neurotalk.org.

The neurotalk support forums I find to be the fastest in discussion responses and easiest to navigate.

MDjunction is harder to navigate, but probably similar in activity.

You can also look for facebook pages or groups. One nice community is myasthenia unmasked, but be careful with over consumption because it tends to be focused on those with more severe or less well controlled MG. Good people, good info, but it might make you crazy if you tend to have health anxiety

Know your body because symptoms and experiences vary from person to person visit your neurologist and PCP (not everything you may experience is MG) regularly and have an open mind to alternative/all-natural treatments but most importantly seek remission and don't settle because this disease doesn't.

Hi, welcome to the site. I am a fellow MG'er. My first experience with MG started in 2015 when I was peeling potatoes. I lost strength in my right hand. It was not until May of 2016 when I started dragging my right leg. I felt like I was carrying bricks on my legs. I would drop anything I picked up with my right hand. I was very fatigue and weak all the time. My PCP sent my for repeated MRI's of my right leg and shoulders as I could not lift my arms above my head. I was slowly falling apart. Fast forward to July 2016 I was so sick that I had trouble walking, talking, double vision in my right eye and a weak neck. I was at work when my legs became paralyzed. I could not move, I was breathing shallow. My eye doctor, pcp and I was seeing a neurologist, no one gave me Mestinon to assist in my possible dx of MG. My eye doctor was the first to suspect because of my eye problems. My pcp had also suspected but the neurologist he referred me to stated my EMG was a false positive so he continued to send my for test which were negative. I finally got a 3rd opinion from my current neurologist who dx and has been treating me. It has been a slow process I have been off work for over a year and now receiving IVIG 2 days a month, I take 40 mg of Prednisone and Mestinon 60-90 mg 4-5 times a day. I walk with a cane and still have bouts of ptosis and chronic weakness.

Good Luck on your journey, you are in my prayers.
Quen1966

Hi, Welcome to the group. This group is not as active as it was after Dailystrength drastically changed the user interface and many folks dropped out.
I have been here since diagnosis in 2012. What I see are new folks coming here, really overwhelmed by finding out they have MG, then working through their treatment, and after 6 months to a year, moving on as they get MG under control through treatment. Some folks never do get this control, and do persist here with their online friends. Others like me, remember how grateful I was to have people with MG to talk to when I had questions, hang around and offer advice, even though, right now, I am in remission. Remissions are of uncertain lengths, but if or when MG returns, the next time around I will know what to do much better than when I first came here wondering if my life was over with the MG diagnosis.
Good Luck
Russ

Thanks to all of you for your input. I was not wild about the diagnosis but am learning a lot about it from this site and from a Facebook support group. Other than a bad case of double vision, weak eyelid and considerable muscle weakness with use, I am not nearly as bad as some of you and others that have posted. I have not yet tried the Mestinon until after our daughter's wedding Saturday in case there are bad side effects. Is this a progressive disease? Did any of you get much worse after your initial diagnosis? I already deal with a life-altering neurological movement disorder for last 32 years, so my "life" as it is won't be altered that much, but wonder if the worst is yet to come. I will think positive. Again, thank you.

For most folks it is progressive but not for everyone -- mg is variable and some folks just have it mildly and get by on mestinon only and others of us have to suppress our immune system
In the good old days about 40% of folks diagnosed died within the first two years - now we can lead a regular length life with treatment

Good Luck
Russ