Myotonia Congenita

Kim, just curious, did you ever take mexiletine, which Brenna in the video says she takes for MC? Apparently at least at the time of the video she sounded like she had found an answer, at least one she preferred to living with the disease symptoms, in this drug.

@kimcvi Ah, I see. It's very interesting about childhood and the diagnosis. I'm sorry. Hank already asked about Mexiletine, spoke about in the video attachment. Does any medication currently bring you relief? Are you able to or have you gone to physical therapy, received myofascial release, as @jenniferhunter brings up? I benefit from MFR as well and recommend it.

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.

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. 🤞🏻

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

I really appreciate all your suggestions even if I have tried it (how would you know if I did or didn’t) I’m sorry if you think I was rude, I didn’t mean for it to be mean or ungrateful because I am very grateful for everything you have said and suggested. Please do not stop helping, advising and suggestions. Thank you and I just watched Brenna’s video very good and helpful, I will try to reach out to her. 😊💕

@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

I did watch her video, Thank you for that post. I will reach out and see if there are any information the can give me. Everyone stay strong and keep going, never give up🥰

@kimcvi You were definitely NOT rude. In fact you have come off as such a sweet nice person you have elicited quite a groundswell of responses here. All I can do is wish you the best in your quest for the help you are seeking and I am sincere when i say we (I think I speak for all of us) are in your corner here on Connect, as much as anyone can be in cyberspace; you have friends here. Good luck Kim. And keep us up to date on what's up with you. Hank

I will definitely keep you all posted. Thank you all for the positive vibes and prayers 🥰