Myotonia Congenita

Hello everyone Kim again, I am just updating as I haven’t checked in in a while as I was getting frustrated not having any answers. I just had a brain scan done and I just sent my Genetic test kit back so hopefully I will get answers soon🤞🤞. The muscle pain is very annoying and the Gabapentin isn’t working but I will wait for the result before I do any medication change. Hope everyone is doing well and staying safe😊🥰

@kimcvi It is wonderful to hear from you! My sympathy to you for all you are going through. I do hope you get some answers. Are you still having anxiety attacks and very stressed? You say the gabapentin is not helping at this point. May I suggest something to you for when you have another anxiety or panic attack? My wife and I have used a product for a long time, since the 1970's called Bach Flowers Rescue Remedy. It is a wonderful thing to take when you are in the midst of any sort of panic attack, in fact that is precisely what it is for. You can get it on Amazon or buy it at Whole Foods if you are near one. Back Flowers are a very subtle and almost an esoteric thing. Here is the link for the wiki page on them: https://en.wikipedia.org/wiki/Bach_flower_remedies . There are a whole set of different ones for different emotional issues, but the Rescue Remedy is for when things really get out of whack.

I suggest these because I have reread some of your previous posts and see that you (and even your children) do suffer from anxiety attacks. This issue in you also seems to sync up with your myotonia congenita, it seems to me. Kim, I truly hope you arrive at a significant answer to your problem(s). There are just so many sweet and humble souls such as yourself that are suffering way too much in this crazy world. All my best to you, Hank

Hello, Thank you for your suggestions, I do have anxiety and panic attack meds, the Gabapentin is for my Myotonia. I am trying to hold out on telling my Dr. that this isn’t working for my muscles until I get my Genetic test back. Hopefully it will explain why the Gabapentin isn’t working for my, I’m on 2400 mg a day and it just doesn’t help. I’m so use to the pain and stiffness that I can wait a few more weeks😊 I do like your ideas for the anxiety meds, I will look into those and read up on them. I really appreciate any kind of suggestions Thank you😊

@kimcvi HI! I am currently going through genetic testing to see if I have myotonia congenita or paramyotonia congenita. I've been having progressed symptoms that include muscle symptoms but also sensory symptoms. I was suggested by another connect user, @jesfactsmon, to reach out to you. My neurologist has told me that if I do test positive for either of the above muscle disorders, it would not explain my sensory symptoms, which include numbness/tingling and nerve pain. Have you experienced any sensory symptoms with MC? Also, when I exercise I get drop foot and quad weakness along with cramping. And when I use my hands, they fatigue quickly, I'm having decreased fine motor control/dexterity, and they cramp frequently. Are any of your symptoms similar to mine? I'm concerned because my neurologist says that neither of these muscle disorders that he is testing for are not debilitating, but my symptoms continue to progress.
I appreciate you taking the time to read my message!
-Casey

Hi Casey😊 I am so glad that you reached out to me. I have been feeling very alone as I have no one to talk to about this. My neurologist at the Mayo is awesome he says that I can bug him anytime I need answers. I am 55 yrs old and have had 3 EMG’s and 3 Genetic tests done I have MC Thomsen Disease which my neurologist said it does get worse with age. My condition gets worse in the fall through spring cold dampness is my enemy. This disease will not shorten your life but as you age will get tougher to move. I cannot work our as I get more stiff. I have pain in my thighs and forearms. My feet hurt due to the shortening of the tendons from walking on my toes do to stiffness. I have AFO Ankle foot braces that help my foot to lift up. I am on 2800mg of Gabapentin. I do not have sensory problems but this disease is very rare and it effects people differently. I would look into what is causing your numbness and tingling whether it be now or after your tests. Please let me know how you are doing and we can always discuss this disease. 😊 Good luck

Kim

HI 🙂 My EMG showed "diffuse myotonia" and my neurologist said that he did not see any issue with my nerves that would be causing my sensory issues. I will have the results from my genetic testing in about 5 weeks, so I guess I'm just waiting until then to determine my next move on this journey, but I feel like having a community, especially someone with potentially a similar diagnosis will make this easier! I currently take Cymbalta for my leg pain, it just started it a few months ago, it has helped but I have noticed that with the recent change in weather my symptoms are worsening, especially my pain. Please feel free to reach out to me at anytime! It is so nice to know that I am not alone! Even if we don't end up having the same diagnosis, it is nice to know someone out there has similar symptoms!

@chamiltonatc @kimcvi
Casey, Kim, I am glad you two have managed to connect with each other. Hope you can be buddies for each other going through this awful ordeal which you each are facing. I'm interested to find out the results of the genetic testing Casey. Best to both of you! Hank

Hang in there Casey and if you want please let me know what your test results say. I have been going through this my whole life and 3 yrs ago I was hit with this diagnosis. So I know how scary this can be but I am here for you if you get sad, frustrated, angry and any other emotion you might get. No judging and I will not tell you you shouldn’t feel the way you are feeling. It’s tough but I believe you can be tougher💪🏻💪🏻😊😊

@kimcvi @chamiltonatc
Kim, Casey, please read the private message I just sent you both. To view it just click on the little envelope symbol in the top right corner area of this page. Thanks, Hank

Hello @chamiltonatc,

I noticed that you last posted a year ago regarding problems with sensory issues. How are you doing? Are you still taking the Cymbalta for the pain?

I would enjoy hearing from you when you have time to post an update.