Hello Everyone it’s been awhile since I last posted, but seeing no one has this disease I don’t see the point. I really appreciate everything you do for us. I wish everyone here can benefit and know that they are not alone in there symptoms. No one Give Up and please talk with your doctors as they need to know how you are doing and feeling.
Hope Everyone has a Wonderful Christmas and Healthy New Year.
Thank you all for listening to me
Kim
Hello Everyone it’s been awhile since I last posted, but seeing no one has this disease I don’t see the point. I really appreciate everything you do for us. I wish everyone here can benefit and know that they are not alone in there symptoms. No one Give Up and please talk with your doctors as they need to know how you are doing and feeling.
Hope Everyone has a Wonderful Christmas and Healthy New Year.
Thank you all for listening to me
Kim
@kimcvi
Hi Kim, I can only imagine how you must feel, having such a rare disease that you (rightly) believe not many can relate to. Since day one of your first post on Connect I have followed your journey as revealed by your posts. I was moved by your situation and your description of how isolated you felt having a disease that is virtually unknown to all of the medical practitioners you talked to. I believe you did begin a line of communication with a doc at Mayo who understood and sympathised and gave you what input he could. Also, you are taking gabapentin, 2800 mg/day which seems to not be that helpful if I have heard you correctly. Have you discussed other options to treat your symptoms besides that, i.e. other medications?
In reviewing these posts of yours I notice that in addition to the MC you also have described having certain psychological issues, as conveyed by descriptions such as "thought of being forgotten" and "My issue is I am forgettable" and "once I leave this world no one will even think of me let alone miss me" and "when ever we go anywhere I always take my keys in case they desert me", they being a reference to your family. It sounds like you fear abandonment and you feel that if you are not remembered your life will have been pointless.
Another thread I find throughout your posts is a feeling that you need to give your self pep talks constantly. You need to keep reminding yourself to stay strong, don't worry, be positive, get your mind off the bad thoughts, etc. All good, except for the fact that you mention this method of keeping yourself supported so often that it seems to be indicative of an ongoing insecurity which you are trying to combat.
I know you are frustrated about having no one else to relate to about MC. Few people have it that you can talk to about it. But your psychological and emotional issues are things which could be helped possibly. I think you said you did go through therapy for ten years, primarily for your anxiety. What was the result of that?
The only thing I did not detect in your writings was any sort of relationship with God or spirituality. If you had that it would likely be a good adjunct to your efforts to build yourself up with the affirmations. As I said, there is a place for affirmations, but they likely will not do the whole job of carrying you out of the dark thoughts you are trying to surmount. I am wondering if spirituality is a significant part of your life even though you haven't mentioned it?
Kim, I do not know what the future holds for you in regard to your Myotonia Congenita, but I do so hope you are able to find peace and understanding within yourself, as well as the ability to relax a bit more and have less OCD. I know you know that my heart goes out to you as it has since I first heard about your case. You are an impressive human being and obviously have an amazing spirit. I also know that saying that does nothing to help you ultimately. Some of the help that you need must come from within yourself. Please continue to use Mayo Connect as a sounding board. You will at least always have a sympathetic ear here.
Hello Everyone it’s been awhile since I last posted, but seeing no one has this disease I don’t see the point. I really appreciate everything you do for us. I wish everyone here can benefit and know that they are not alone in there symptoms. No one Give Up and please talk with your doctors as they need to know how you are doing and feeling.
Hope Everyone has a Wonderful Christmas and Healthy New Year.
Thank you all for listening to me
Kim
Well I have read about the MC and they indicated that this isn’t progressive Thomsen MC but my neurologist at the Mayo disagrees as everyone’s body reacts differently to any disease. I have not personally reached out to NORD, never thought of connecting with them.
Kim
@kimcvi
Hi Kim, I can only imagine how you must feel, having such a rare disease that you (rightly) believe not many can relate to. Since day one of your first post on Connect I have followed your journey as revealed by your posts. I was moved by your situation and your description of how isolated you felt having a disease that is virtually unknown to all of the medical practitioners you talked to. I believe you did begin a line of communication with a doc at Mayo who understood and sympathised and gave you what input he could. Also, you are taking gabapentin, 2800 mg/day which seems to not be that helpful if I have heard you correctly. Have you discussed other options to treat your symptoms besides that, i.e. other medications?
In reviewing these posts of yours I notice that in addition to the MC you also have described having certain psychological issues, as conveyed by descriptions such as "thought of being forgotten" and "My issue is I am forgettable" and "once I leave this world no one will even think of me let alone miss me" and "when ever we go anywhere I always take my keys in case they desert me", they being a reference to your family. It sounds like you fear abandonment and you feel that if you are not remembered your life will have been pointless.
Another thread I find throughout your posts is a feeling that you need to give your self pep talks constantly. You need to keep reminding yourself to stay strong, don't worry, be positive, get your mind off the bad thoughts, etc. All good, except for the fact that you mention this method of keeping yourself supported so often that it seems to be indicative of an ongoing insecurity which you are trying to combat.
I know you are frustrated about having no one else to relate to about MC. Few people have it that you can talk to about it. But your psychological and emotional issues are things which could be helped possibly. I think you said you did go through therapy for ten years, primarily for your anxiety. What was the result of that?
The only thing I did not detect in your writings was any sort of relationship with God or spirituality. If you had that it would likely be a good adjunct to your efforts to build yourself up with the affirmations. As I said, there is a place for affirmations, but they likely will not do the whole job of carrying you out of the dark thoughts you are trying to surmount. I am wondering if spirituality is a significant part of your life even though you haven't mentioned it?
Kim, I do not know what the future holds for you in regard to your Myotonia Congenita, but I do so hope you are able to find peace and understanding within yourself, as well as the ability to relax a bit more and have less OCD. I know you know that my heart goes out to you as it has since I first heard about your case. You are an impressive human being and obviously have an amazing spirit. I also know that saying that does nothing to help you ultimately. Some of the help that you need must come from within yourself. Please continue to use Mayo Connect as a sounding board. You will at least always have a sympathetic ear here.
Hello Hank, I didn’t see my response to what you wrote so if I’m repeating myself sorry. I really appreciate your read. I am also grateful for this chat place. I have just came back from the Mayo and I will be going back for extensive testing. I think I got them baffled😂 I am grateful for them as they are not pushing me aside, they seem concerned and wanting to find out what’s going on. My doctors here just throw up their hands and chalk everything to my MC. I don’t go to church as I believe it should be more of a spiritual gathering then how much money I give. I try to stay happy and keep going as I do Love Life but sometimes it’s just too much and I have a me moment.
Thank you so much for listening it really does help
Kim🥰
My symptoms compared to the NORD are more severe then they indicate that Thomsen is. Also I do not have the warm up effect. I have had a Genetic test to rule out Myotonia type 1 & 2 then proceeded with the genetic test to tell me what I have which was MC Thomsen. Talking with my neurologist in the Mayo describing to him my symptoms he decided another genetic test to rule out any other myotonia and that came back confirming MC Thomsen. With all that the other tests I have had has been 3 EMG’s which confirm myotonia with myopathy.
Kim
@kimcvi Since MC is a usually considered an "inherited" problem, Do you have any records or information from parents, and other relatives about their having these same symptoms.. ?
No I do not and I have asked my family. No one in the older generation never talked about any diseases tif any that were in the family. They just would say it was none of my business. All my grandparents and parents have passed away. So I am doing this not just for myself but my kids. They are in there late 20’s and show no signs of what I have. I am 55 yrs old now and had signs back in my early teens.
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Hello Everyone it’s been awhile since I last posted, but seeing no one has this disease I don’t see the point. I really appreciate everything you do for us. I wish everyone here can benefit and know that they are not alone in there symptoms. No one Give Up and please talk with your doctors as they need to know how you are doing and feeling.
Hope Everyone has a Wonderful Christmas and Healthy New Year.
Thank you all for listening to me
Kim
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2 Reactions@kimcvi
Hi Kim, I can only imagine how you must feel, having such a rare disease that you (rightly) believe not many can relate to. Since day one of your first post on Connect I have followed your journey as revealed by your posts. I was moved by your situation and your description of how isolated you felt having a disease that is virtually unknown to all of the medical practitioners you talked to. I believe you did begin a line of communication with a doc at Mayo who understood and sympathised and gave you what input he could. Also, you are taking gabapentin, 2800 mg/day which seems to not be that helpful if I have heard you correctly. Have you discussed other options to treat your symptoms besides that, i.e. other medications?
In reviewing these posts of yours I notice that in addition to the MC you also have described having certain psychological issues, as conveyed by descriptions such as "thought of being forgotten" and "My issue is I am forgettable" and "once I leave this world no one will even think of me let alone miss me" and "when ever we go anywhere I always take my keys in case they desert me", they being a reference to your family. It sounds like you fear abandonment and you feel that if you are not remembered your life will have been pointless.
Another thread I find throughout your posts is a feeling that you need to give your self pep talks constantly. You need to keep reminding yourself to stay strong, don't worry, be positive, get your mind off the bad thoughts, etc. All good, except for the fact that you mention this method of keeping yourself supported so often that it seems to be indicative of an ongoing insecurity which you are trying to combat.
I know you are frustrated about having no one else to relate to about MC. Few people have it that you can talk to about it. But your psychological and emotional issues are things which could be helped possibly. I think you said you did go through therapy for ten years, primarily for your anxiety. What was the result of that?
The only thing I did not detect in your writings was any sort of relationship with God or spirituality. If you had that it would likely be a good adjunct to your efforts to build yourself up with the affirmations. As I said, there is a place for affirmations, but they likely will not do the whole job of carrying you out of the dark thoughts you are trying to surmount. I am wondering if spirituality is a significant part of your life even though you haven't mentioned it?
Kim, I do not know what the future holds for you in regard to your Myotonia Congenita, but I do so hope you are able to find peace and understanding within yourself, as well as the ability to relax a bit more and have less OCD. I know you know that my heart goes out to you as it has since I first heard about your case. You are an impressive human being and obviously have an amazing spirit. I also know that saying that does nothing to help you ultimately. Some of the help that you need must come from within yourself. Please continue to use Mayo Connect as a sounding board. You will at least always have a sympathetic ear here.
Best to you, Hank
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1 ReactionHave you been in touch with NORD? https://rarediseases.org/rare-diseases/myotonia-congenita/.
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1 ReactionWell I have read about the MC and they indicated that this isn’t progressive Thomsen MC but my neurologist at the Mayo disagrees as everyone’s body reacts differently to any disease. I have not personally reached out to NORD, never thought of connecting with them.
Kim
I read through their description of MC and wondered how it compared to your experience.
Hello Hank, I didn’t see my response to what you wrote so if I’m repeating myself sorry. I really appreciate your read. I am also grateful for this chat place. I have just came back from the Mayo and I will be going back for extensive testing. I think I got them baffled😂 I am grateful for them as they are not pushing me aside, they seem concerned and wanting to find out what’s going on. My doctors here just throw up their hands and chalk everything to my MC. I don’t go to church as I believe it should be more of a spiritual gathering then how much money I give. I try to stay happy and keep going as I do Love Life but sometimes it’s just too much and I have a me moment.
Thank you so much for listening it really does help
Kim🥰
My symptoms compared to the NORD are more severe then they indicate that Thomsen is. Also I do not have the warm up effect. I have had a Genetic test to rule out Myotonia type 1 & 2 then proceeded with the genetic test to tell me what I have which was MC Thomsen. Talking with my neurologist in the Mayo describing to him my symptoms he decided another genetic test to rule out any other myotonia and that came back confirming MC Thomsen. With all that the other tests I have had has been 3 EMG’s which confirm myotonia with myopathy.
Kim
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Helpful -
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1 ReactionGlad that you are getting serious consideration at Mayo. Hope they will offer clarity and any remediation available. Best wishes.
@kimcvi Since MC is a usually considered an "inherited" problem, Do you have any records or information from parents, and other relatives about their having these same symptoms.. ?
No I do not and I have asked my family. No one in the older generation never talked about any diseases tif any that were in the family. They just would say it was none of my business. All my grandparents and parents have passed away. So I am doing this not just for myself but my kids. They are in there late 20’s and show no signs of what I have. I am 55 yrs old now and had signs back in my early teens.