← Return to Myotonia Congenita

Discussion

Myotonia Congenita

Neuropathy | Last Active: Jun 17, 2023 | Replies (154)
Comment receiving replies
@kimcvi

Yes I have tried mexiletine and I am allergic to it. I take a muscle relaxer and also 800 mg Gabapetine 3 times a day. Some Relief except on my bad days. Right now I am in the process of getting another Genetic test done too see what exact disease I have in the Myotonia Congenita disease so that I can hopefully start on a treatment that will help. I don’t fit into the MC Thomsen definition or the Becker’s. I do not have the so called warm up effect and I have been progressively getting worse. My Neurologist at the Mayo has not given up on me. He is making time for me to figure out what is going on. My heart goes out to him and his staff, they never make me feel like I’m wasting their time.

Jump to this post

Replies to "Yes I have tried mexiletine and I am allergic to it. I take a muscle relaxer..."
Rachel, Volunteer Mentor | @rwinney | Jul 30, 2020

Well, this warms my heart. To know you have good support with your Drs. is soooo important. I'm glad they are fighting for you. Good luck with continued genetic testing. Fingers are crossed Drs. can narrow down your diagnosis. 🤞🏻

VIEW AND REPLY
Hank | @jesfactsmon | Jul 30, 2020

Well duh, of course you have tried mexiletine. If I thought I was going to find out anything about MC and it's treatments in only 2 hours that you didn't already know having had this your whole life I think I'd be pretty silly (and perhaps I am a bit). I just appreciate your sincerity, and I sensed your feeling of isolation from others with your illness, much like Brenna in the video. If nothing else I am eager to be of help if I can but I guess you're on your own. Did you connect with the MC facebook group Brenna mentioned (assuming you are on fb)? Again I assume you've explored that already. Good luck in any case Kim, you've always got some sympathetic ears here, if nothing else. Best, Hank

VIEW AND REPLY
lioness | @lioness | Jul 30, 2020

@kimcvi I'm so glad to hear your Dr,s nurses aren't giving up I hope and pray for you and will put you on my prayer group if you want. There where good information from Brenna have you been able to look at her site? We are here for you if you need to vent this forum is a good forum to do that everyone no on pain needs to vent at times bless you for your strength the Lord provides when we can't

VIEW AND REPLY