Myotonia Congenita

Posted by kimcvi @kimcvi, Jul 20, 2020

Hello, does anyone here have MC and how to relive muscle pain

Interested in more discussions like this? Go to the Neuropathy group.

@kimcvi

Thank you Hank. Everyone here is so nice and helpful and always giving out suggestions not demanding like some people. I haven’t told a lot of people about me that I know because all of a sudden they become your doctor. They don’t ask me about it, they would ask me what’s wrong with my leg and why I am walking funny, I would respond oh I have Myotonia Congenita, then instead of saying what is that, they would say You should try this or take this Vitamin. 😡😡 So when I started on Mayo Connect you all gave the correct answer I haven’t heard of that what is it? Thank you all for that and Thank you all for giving me “have you tried this” not telling me to try it.
Thank you again and sorry for venting but everyone here is a breath of fresh air💕 I am CHEERING EVERYONE on may you ALL find Answers and Healing🤞💕
Kim

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@kimcv1
We are a mutual cheering section here Kim. So GO KIM!!!

(Also, your use of emojis made me chuckle 😀)

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I’m glad I could put a smile on your face. I like emojis they really help me with trying to let people know how I feel without being so mean with words. 😊
I hope everyone has a Good pain free Weekend
Kim

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@kimcvi

I have multiple issues going on with my foot and ankle, plantar fasciitis is also one of the main problems. My Achilles big toe joint(no bunion or gout) top of foot Bone, outside of foot and orotund the back of heel to the bottom of heel. It’s just messed up from walking like I have been for about 3 years now. My MC has been getting worse ( but medical papers on MC says it’s not suppose to) Go figure I would go against medical document 😂😂

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Although I rarely write, I am truly concerned for your health issues and always wish you the best! I do not have MC, but have multiple left foot issues which are a daily source of chronic pain and discomfort. I am scheduled to have a consult with a spine specialist due to some kind of arthritic flare up in my mid and lower back in the near future at Mayo and maybe I will have some answers (or maybe not)….our journies😊

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March will be about 2 1/2 yrs that I have been going through this with my foot. I am sorry your foot is in bad shape too. I have all the Faith in Mayo that they will figure it out. They are the ones trying to figure mine out. My doctors here threw their hands up and said”You have MC I can’t help you” So frustrating 😡Best of Luck to you🤞Please let us know how your Journey is going💕
Kim

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Love the new format💕💕
Hello Kim here and frustrated 😡 I am sorry that I haven’t posted in awhile but waiting to here from the Mayo regarding my MRI’s. Turns out they do not know what to do🤯 I seem to be the kind of person that is complicated 🤪 Still wearing the walking boot which is about 21/2 months now🤔 I am at a crossroad here and not sure what to do. They want me to go back to the Mayo for further testing but it kind of gets expensive with the hotel bill. So I am wallowing in my self pity right now but trying to stay positive🙄🙄 Hope everyone is doing Well. I think of everyone all the time. Thank you for whoever reads this and letting me have a moment🥰💕

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Hello again, I am looking for some suggestions regarding my issues. I have a physician assistant that has been looking into my foot and ankle pain and I have been trying to ask this person questions and that person does not get back to me. I am seeing an ortho here at home who is willing to help me but due to my Myotonia they are a little nervous as they do not know much about this disease. I sent a message to the PA who is too far to see and asked what additional test they want so I can relay this to the Ortho I will be seeing and they have not gotten back to me yet and it has been 3 days. Not sure what the protocol on what to do if a medical provider does not respond to your messages. Please any suggestions would help me

Thank you
KIm

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@kimcvi

Hello again, I am looking for some suggestions regarding my issues. I have a physician assistant that has been looking into my foot and ankle pain and I have been trying to ask this person questions and that person does not get back to me. I am seeing an ortho here at home who is willing to help me but due to my Myotonia they are a little nervous as they do not know much about this disease. I sent a message to the PA who is too far to see and asked what additional test they want so I can relay this to the Ortho I will be seeing and they have not gotten back to me yet and it has been 3 days. Not sure what the protocol on what to do if a medical provider does not respond to your messages. Please any suggestions would help me

Thank you
KIm

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@kimcvi is the PA that you have been seeing at Mayo Clinic? If so, have you been messaging on the Patient Portal with no response?

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Yes, I have been messaging him there. It was over a month then I called and they put me through to him ASAP. I don’t want to be one of those people, I don’t want to get him mad at me if I call again🥺

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@kimcvi

Yes, I have been messaging him there. It was over a month then I called and they put me through to him ASAP. I don’t want to be one of those people, I don’t want to get him mad at me if I call again🥺

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I would recommend calling in and then confirming what is the best way in which to reach him in the future with questions (i.e. patient portal, phone, etc.).

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@amandajro

I would recommend calling in and then confirming what is the best way in which to reach him in the future with questions (i.e. patient portal, phone, etc.).

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Thank you, I will do that. 😊

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