Share some medications that have been proved to be useful for CMS patients.
Hii everyone!
I have a neurological disorder called congenital myasthenic syndrome (CMS). Despite trying various medications, none of them have been effective. My neurologist has suggested ephedrine treatment, which has been proven to work well for people with my condition. Unfortunately, I have not been able to find ephedrine pills/injections in Pakistan, and I am in desperate need it.
I have experimented with various medications including mestinon, clenbuterol, venex, and amygra, but unfortunately, none of them worked for me. I did have some initial success with ventolin a few months ago, which lasted for about 3-4 months, but eventually, the effects diminished. Recently, I stopped using all medications except mestinon, but when I tried amygra and ventolin again, I noticed some improvement initially, but it only lasted for a two days and then my condition worsened, and I experienced extreme weakness.
I don't understand why these medications only work for a short time and then stop being effective.
My condition is just worsening day by day...
Hi there, thanks for sharing with us - I am so glad you have found our community. That must be extremely tough to deal with and I am sorry to hear your condition continues to worsen. From what I know, CMG is in fact more rare than MG. Did you develop CMG as a child? According to this article on our site about rare myasthenic syndromes, it states that CMG usually presents itself in newborns or young children: https://myasthenia-gravis.com/syndromes
Sadly, I haven't seen too many members here mention living with CMS. I did want to share this article about CMS that has a list of drugs that includes 3,4-DAP, Quinidine, Fluoxetine - in addition to Ephedrine that you mentioned above. Unforunately, I am not sure if these treatments are available in your country: https://myasthenia-gravis.com/clinical/congenital-syndrome Sending hugs your way! Best, Kaitlyn (Team Member)
