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kimcvi (@kimcvi)

Myotonia Congenita

Neuropathy | Last Active: Jan 27 6:19pm | Replies (151)

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@kimcvi

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

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Replies to "Hi Casey😊 I am so glad that you reached out to me. I have been feeling..."

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!