Congenital myasthenic syndrome
I'm a Brit in my mid-seventies living in Germany and have had CMG for the past 35 years. CMG means that I have a genetic defect, not an auto-immune disease. However, the symptoms are very similar to MG with muscle weakness particularly in my arms and legs that gets more pronounced as the day goes on. I take Mestinon and have increased my dose considerably over the past few years.
I feel very "alone" in that CMG is even rarer than MG. Is there anyone else out there with it?
MaryClelland Hi Mary, I am here 4 years later reading your post, as I just got the diagnosis of MG. It is interesting to learn about CMS. I say interesting but not take this lightly. Such a tough and emotional situation to deal with this. How are you doing? Just want to check in. You are not alone. I suspect many MG people could be CMS. So how has your life being like? Can you do a lot of things that you love to do? I hope so. I am adapting also. Best wishes!
parklover How very kind of you to write and I'm sorry you've been diagnosed with MG. How is affecting you? What medication are you on?
Although the tetrapareze ( weakness in all four limbs) is common to both MG and CMS, it is easy for a doctor to test to see if it's autoimmune and therefore MG. CMS is very rare.
Since writing 4 years ago, there is now a little WhatsApp Group of three of us in Germany with CMS so that's good.
Now that I'm nearly 80 years old ie the aging factor must certainly be taken into account and that means I am greatly reduced in what I can do, particularly as regards walking. Maybe 500m on an average day and that's using two sticks. At the moment, as you know, most of Europe is having a heatwave and that has made things a lot worse for me. Not everyone is affected that way but many are. What about you, are you adversely affected by heat or cold? Best wishes anyway
LANE Parker
Yes
Hello and welcome to our wonderful community of supportive MG warriors! We'd be thrilled to hear more about your specific experience with MG if you're willing to share. Your story could help and inspire others!
-Jodi, Team Member
Hello
It's never a good feeling to feel alone. I hope this community can change that for you. We are all here to support you and you might come across someone that shares a similar experience with CMG as you. I will definitely be doing my research on this form of MG so I can better understand. You are more than welcome to message me as well. Sending you all the best of luck. - Jazmin (team member) Is there a connection between CMG and MG with no antibodies detected?
