Thank you both for the support. I will look into the Uk. My doctors here are so very nice and very apologetic to the point of not being able to help me. They indicated to me that I will probably be their only patient that has this. There are days when I just need to know that someone else is going through this too. My family are very supportive and understanding, it would just be nice to vent with someone who is going through with the same things. I tried going through the MD program but because this is part of the MD but a Non-dystrophy disease they kind of dismissed my concerns and symptoms. The Mayo has really been nice and my neurologist and his nurse help me when possible but I hate bugging them as I know how busy they are (they keep telling me that it is not a issue that I message them). I just hope that someone sees this page and will be relieved that there is someone here for them.
Thank you - And Always remember - Anyone can give up, its the easiest thing in the world to do. But to hold it together when everyone else would fall apart - That is True Strength. 🙂 Keep on Smiling
Kim
Thank you both for the support. I will look into the Uk. My doctors here are so very nice and very apologetic to the point of not being able to help me. They indicated to me that I will probably be their only patient that has this. There are days when I just need to know that someone else is going through this too. My family are very supportive and understanding, it would just be nice to vent with someone who is going through with the same things. I tried going through the MD program but because this is part of the MD but a Non-dystrophy disease they kind of dismissed my concerns and symptoms. The Mayo has really been nice and my neurologist and his nurse help me when possible but I hate bugging them as I know how busy they are (they keep telling me that it is not a issue that I message them). I just hope that someone sees this page and will be relieved that there is someone here for them.
Thank you - And Always remember - Anyone can give up, its the easiest thing in the world to do. But to hold it together when everyone else would fall apart - That is True Strength. 🙂 Keep on Smiling
Kim
Thank you both for the support. I will look into the Uk. My doctors here are so very nice and very apologetic to the point of not being able to help me. They indicated to me that I will probably be their only patient that has this. There are days when I just need to know that someone else is going through this too. My family are very supportive and understanding, it would just be nice to vent with someone who is going through with the same things. I tried going through the MD program but because this is part of the MD but a Non-dystrophy disease they kind of dismissed my concerns and symptoms. The Mayo has really been nice and my neurologist and his nurse help me when possible but I hate bugging them as I know how busy they are (they keep telling me that it is not a issue that I message them). I just hope that someone sees this page and will be relieved that there is someone here for them.
Thank you - And Always remember - Anyone can give up, its the easiest thing in the world to do. But to hold it together when everyone else would fall apart - That is True Strength. 🙂 Keep on Smiling
Kim
That is great advice! I only hope I can tap into that true strength when the time comes that I really need it. The world is such an insane place these days who knows when that might be. Hang in there Kim, if I think of any ideas that might be helpful I will post to you. Best, Hank
Thank you both for the support. I will look into the Uk. My doctors here are so very nice and very apologetic to the point of not being able to help me. They indicated to me that I will probably be their only patient that has this. There are days when I just need to know that someone else is going through this too. My family are very supportive and understanding, it would just be nice to vent with someone who is going through with the same things. I tried going through the MD program but because this is part of the MD but a Non-dystrophy disease they kind of dismissed my concerns and symptoms. The Mayo has really been nice and my neurologist and his nurse help me when possible but I hate bugging them as I know how busy they are (they keep telling me that it is not a issue that I message them). I just hope that someone sees this page and will be relieved that there is someone here for them.
Thank you - And Always remember - Anyone can give up, its the easiest thing in the world to do. But to hold it together when everyone else would fall apart - That is True Strength. 🙂 Keep on Smiling
Kim
@kimcvi Kim, did you watch this video? https://www.youtube.com/watch?v=LQci1f_kUOY
This lady, Brenna Burk, talks about having MC and gives her Instagram name, apparently willing to be contacted. Video is from late 2018. Have you tried to contact her? She seems very nice and she talks about it in detail. Hope this helps.
Thank you all for the wonderful responses, I know not to give up as “CAN’T” has not ever been in my vocabulary, when someone’s tells me “I can’t”, I prove to them that I can 🙂 also “With Faith it may not be easy but it is Possible”. I know I have so many quotes that I say to myself just to get through the day. Maybe some of my quotes will help you.
As for Myotonia Congenita it is a mutation in the muscle that makes it hard to walk or shake hands. If you google fainting goats that is what happens. Your muscle contact and stiffen up so you kind of either fall on your face or end up walking like Frankenstein. I use AFO’s as this disease is starting to shorten my tendons in the calves due to walking in my tip toes when my legs don’t bend. On my worst days my muscles fight against me it’s like trying to put two magnets together opposite of each other. That’s the best description I have and that seems to help my doctors try to understand what I am feeling and fighting.
Thank you all for the wonderful responses, I know not to give up as “CAN’T” has not ever been in my vocabulary, when someone’s tells me “I can’t”, I prove to them that I can 🙂 also “With Faith it may not be easy but it is Possible”. I know I have so many quotes that I say to myself just to get through the day. Maybe some of my quotes will help you.
As for Myotonia Congenita it is a mutation in the muscle that makes it hard to walk or shake hands. If you google fainting goats that is what happens. Your muscle contact and stiffen up so you kind of either fall on your face or end up walking like Frankenstein. I use AFO’s as this disease is starting to shorten my tendons in the calves due to walking in my tip toes when my legs don’t bend. On my worst days my muscles fight against me it’s like trying to put two magnets together opposite of each other. That’s the best description I have and that seems to help my doctors try to understand what I am feeling and fighting.
@kimcvi I researched MC earlier and got the low down. I'm curious, if you dont mind sharing, your age and how long you've been fighting this horid disease?
Thank you both for the support. I will look into the Uk. My doctors here are so very nice and very apologetic to the point of not being able to help me. They indicated to me that I will probably be their only patient that has this. There are days when I just need to know that someone else is going through this too. My family are very supportive and understanding, it would just be nice to vent with someone who is going through with the same things. I tried going through the MD program but because this is part of the MD but a Non-dystrophy disease they kind of dismissed my concerns and symptoms. The Mayo has really been nice and my neurologist and his nurse help me when possible but I hate bugging them as I know how busy they are (they keep telling me that it is not a issue that I message them). I just hope that someone sees this page and will be relieved that there is someone here for them.
Thank you - And Always remember - Anyone can give up, its the easiest thing in the world to do. But to hold it together when everyone else would fall apart - That is True Strength. 🙂 Keep on Smiling
Kim
@jesfactsmon That was so interesting . NOw I too know a little bit more about this disease . Kim you need to watch this and contact her I think she can help some. Thanks Hank
@kimcvi I researched MC earlier and got the low down. I'm curious, if you dont mind sharing, your age and how long you've been fighting this horid disease?
I am 54 and found out about this 3 years ago when my doctor finally said you need to go to the Mayo. I knew about it at a young age, my parents said it was growing pains. I don’t fault them at all due to no one in the USA knew about this disease til about 2000.
Hello Everyone, I have a question for you. Can anyone answer this question.. How do you cope with a muscle disease that no doctor in your area can help you with and seeing my first post it doesn’t look like anyone has Myotonia Congenita so, so far I am alone in this challenge of mine. I would appreciate any suggestions and/or advice
Kim
Hi Kim. I don't know if anyone has suggested myofascial release therapy. From your posts, it sounds like exercise makes your muscles worse and tighter. What MFR does is to stretch the fascia which is the connective tissue that envelopes muscles and everything else, and your therapist will do this as you lay on the table. It might be something to try to see if it helps loosen your muscles so they can move better. I have done a lot of MFR myself and it has helped me a lot. I don't share your diagnosis, but this came to mind. Here is our discussion on MFR that has a lot of information. There is a provider search on the MFR website. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
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Thank you both for the support. I will look into the Uk. My doctors here are so very nice and very apologetic to the point of not being able to help me. They indicated to me that I will probably be their only patient that has this. There are days when I just need to know that someone else is going through this too. My family are very supportive and understanding, it would just be nice to vent with someone who is going through with the same things. I tried going through the MD program but because this is part of the MD but a Non-dystrophy disease they kind of dismissed my concerns and symptoms. The Mayo has really been nice and my neurologist and his nurse help me when possible but I hate bugging them as I know how busy they are (they keep telling me that it is not a issue that I message them). I just hope that someone sees this page and will be relieved that there is someone here for them.
Thank you - And Always remember - Anyone can give up, its the easiest thing in the world to do. But to hold it together when everyone else would fall apart - That is True Strength. 🙂 Keep on Smiling
Kim
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1 ReactionThat is great advice! I only hope I can tap into that true strength when the time comes that I really need it. The world is such an insane place these days who knows when that might be. Hang in there Kim, if I think of any ideas that might be helpful I will post to you. Best, Hank
@kimcvi Kim, did you watch this video?
https://www.youtube.com/watch?v=LQci1f_kUOY
This lady, Brenna Burk, talks about having MC and gives her Instagram name, apparently willing to be contacted. Video is from late 2018. Have you tried to contact her? She seems very nice and she talks about it in detail. Hope this helps.
-
Like -
Helpful -
Hug
3 ReactionsThank you all for the wonderful responses, I know not to give up as “CAN’T” has not ever been in my vocabulary, when someone’s tells me “I can’t”, I prove to them that I can 🙂 also “With Faith it may not be easy but it is Possible”. I know I have so many quotes that I say to myself just to get through the day. Maybe some of my quotes will help you.
As for Myotonia Congenita it is a mutation in the muscle that makes it hard to walk or shake hands. If you google fainting goats that is what happens. Your muscle contact and stiffen up so you kind of either fall on your face or end up walking like Frankenstein. I use AFO’s as this disease is starting to shorten my tendons in the calves due to walking in my tip toes when my legs don’t bend. On my worst days my muscles fight against me it’s like trying to put two magnets together opposite of each other. That’s the best description I have and that seems to help my doctors try to understand what I am feeling and fighting.
-
Like -
Helpful -
Hug
4 Reactions@kimcvi I researched MC earlier and got the low down. I'm curious, if you dont mind sharing, your age and how long you've been fighting this horid disease?
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Hug
1 Reaction@kimcvi Glad we could help and I hope you find some relieve Kim let us know how things go.
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2 Reactions@jesfactsmon That was so interesting . NOw I too know a little bit more about this disease . Kim you need to watch this and contact her I think she can help some. Thanks Hank
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2 ReactionsI am 54 and found out about this 3 years ago when my doctor finally said you need to go to the Mayo. I knew about it at a young age, my parents said it was growing pains. I don’t fault them at all due to no one in the USA knew about this disease til about 2000.
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Helpful -
Hug
3 ReactionsHi Kim. I don't know if anyone has suggested myofascial release therapy. From your posts, it sounds like exercise makes your muscles worse and tighter. What MFR does is to stretch the fascia which is the connective tissue that envelopes muscles and everything else, and your therapist will do this as you lay on the table. It might be something to try to see if it helps loosen your muscles so they can move better. I have done a lot of MFR myself and it has helped me a lot. I don't share your diagnosis, but this came to mind. Here is our discussion on MFR that has a lot of information. There is a provider search on the MFR website. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
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4 Reactions