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Myotonia Congenita

Neuropathy | Last Active: Jun 17, 2023 | Replies (154)

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@kimcvi

Hi Hank, I did see my Neurologist and he stated that my foot/ankle pain is not MC but I am curious as is this something that could have happened from the way I walk due to the MC? I just freeze up when I hear “Not sure what this is.” I have to wear the walking boot for a month to see if it has calmed my ankle/foot down then depending on that I might have to go back to the Mayo depending on what the MRI shows after the month is up. I did see a Orthopedic PA, had ultrasounds and EMG’s done. I am waiting now for the Doctor from Orthopedics to get back to me on what the EMG’s and Ultrasounds say. My Neurologist just confirmed my Myotonia (like that was going to be healed 🙂 ) but other than that he said that I should wait and see what the ORTHO doctor has to say, if I didn’t hear anything from him by yesterday my Neurologist told me to try to get a hold of the Ortho, so I just sent him a message to contact me on what he thinks is going on. So right now I am in a walking boot (for a month), on Aleve for a month and some cream to put on my ankle if needed. I just get so tired of hearing “Not sure what this is”. My Uncle who has MS keeps telling me that this is rare and that I should just have faith that the Mayo will figure it out. I know he is right and the Mayo does treat me nice - but I still get frustrated.
Thank you for listening

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Replies to "Hi Hank, I did see my Neurologist and he stated that my foot/ankle pain is not..."

@kimcvi
I am frustrated for you!

What are the effects of your foot issue? Can you walk OK? Is it painful when off of it? How does it look? Normal, abnormal? Why does he think it's not related to MC. Why just one foot and not both? Did you ever try myofascial release therapy for it? Again with the questions -I must have been a gameshow host in a former life -Colleen has told me too many questions can be overwhelming, sorry. But, as I said, I am frustrated for you. I want a good outcome for you, naturally. Hank