Myotonia Congenita

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

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

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

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😊

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

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🥰💕

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

@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?

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🥺

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.).

Thank you, I will do that. 😊