@kimcvi Perhaps, if you are in the same town where your parents live the clinic May have retained health records.. a long shot.. but Call and ask if they have any records for your Parents in the Archives..
I could but my parents did not see doctors until they were in their 70’s. I barely went to the doctors as a child. Any complaint I had as a child was growing pains. That is why the Mayo thought it would be best to do genetic tests. I appreciate the suggestions I never thought of that, II just might try that Avenue.
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🥰
@kimcvi
Kim, sorry I missed your first response. Maybe the text got lost, that seems to happen occasionally on computers or phones. If there was anything important in your first attempt that you did not say again in the second, please let me know.
Also, I want to say that for a family member to respond to a question about possible diseases in the family by saying it is none of your business sure sounds like an odd response.
And finally, in response to your comment about going to church, I can tell you definitively that in order to establish a spiritual relationship with God you absolutely do not need a church. I am sure mankind has been reaching out to a higher power since long before churches ever existed. But you are also very lucky to have loving kids and a loving spouse. It's also great that the Mayo folks are hanging in there throughout this whole mystery of your health issues. I am happy to know that you are at least not alone in this.
Please take good care. And do keep talking with everyone here, regardless of MC being so rare. Even though it is not exactly what others have, there are people with similar problems. Remember Casey @chamiltonatc who had "diffuse myotonia" ? Also, another person just today described having dystonia, which sounded somewhat similar to MC. You may want to check her out by clicking here @daphne47 and reading her posts. Wishing you all the best Kim, Hank
Hello Everyone, just been at the Mayo and more questions than answers 😡 sorry to burden everyone but I just feel frustrated. I came home from the Mayo with I don’t know why are what is causing your pain or the malfunction in your foot. I just get tired of I see there is something but I don’t know what. It is making me feel like that is what doctors say when they don’t believe you. I wish the could literally walk in my feet, legs and use my hands! Not that I want anything wrong but my husband goes to the doctor with some kind of pain and presto he is fixed. I just needed the venting as My words don’t come out verbally for anyone to understand what my point is. Hope everyone is staying safe and Thank you again for letting me vent
Kim
Hello Everyone, just been at the Mayo and more questions than answers 😡 sorry to burden everyone but I just feel frustrated. I came home from the Mayo with I don’t know why are what is causing your pain or the malfunction in your foot. I just get tired of I see there is something but I don’t know what. It is making me feel like that is what doctors say when they don’t believe you. I wish the could literally walk in my feet, legs and use my hands! Not that I want anything wrong but my husband goes to the doctor with some kind of pain and presto he is fixed. I just needed the venting as My words don’t come out verbally for anyone to understand what my point is. Hope everyone is staying safe and Thank you again for letting me vent
Kim
@kimcvi
Hi Kim, did you see the neurologist that you had been communicating with these past several months there at Mayo? You had mentioned him as someone who seemed to understand your case. What did he say specifically? Did you see other doctors, and of which specialties were they? I am surprised at their reaction to you. Did they perform any tests, and which tests were they? Did they suggest any treatment ideas? Was there any plan for follow up appointments or anything else? Forgive the barrage of questions. Feel free to answer or don't answer any that you care to. I'm just so curious at how you were handled there at Mayo. Best, Hank
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
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
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
Hi Hank, no your questions are fine. MC effects both sides not just one. My foot is normal just can’t bear weight on the heel as I walk a lot on my toes due to stiffness in my legs when I start walking or do too much walking. They think there’s a possibility my tendons might have shortened. I have not tried myofacial release as no one suggested it. I will bring this up to the doctors. Thank you for the suggestion. Never feel bad about asking too many questions that is how we learn and show that we care as I can tell by all your comments on all the groups you care. I thank you for that also. 😊
Hi Hank, no your questions are fine. MC effects both sides not just one. My foot is normal just can’t bear weight on the heel as I walk a lot on my toes due to stiffness in my legs when I start walking or do too much walking. They think there’s a possibility my tendons might have shortened. I have not tried myofacial release as no one suggested it. I will bring this up to the doctors. Thank you for the suggestion. Never feel bad about asking too many questions that is how we learn and show that we care as I can tell by all your comments on all the groups you care. I thank you for that also. 😊
Hi @kimcvi - You mentioned walking on your toes due to stiffness in your legs and you can't bear weight on your heels when walking. Do you have pain in the heels if you try to walk normally? Just wondering if it might be related to plantar fasciitis since that is one of the most common causes for heel pain. There is another discussion here that might interest you if it's a possible cause of your symptoms.
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@kimcvi Perhaps, if you are in the same town where your parents live the clinic May have retained health records.. a long shot.. but Call and ask if they have any records for your Parents in the Archives..
I could but my parents did not see doctors until they were in their 70’s. I barely went to the doctors as a child. Any complaint I had as a child was growing pains. That is why the Mayo thought it would be best to do genetic tests. I appreciate the suggestions I never thought of that, II just might try that Avenue.
@kimcvi
Kim, sorry I missed your first response. Maybe the text got lost, that seems to happen occasionally on computers or phones. If there was anything important in your first attempt that you did not say again in the second, please let me know.
Also, I want to say that for a family member to respond to a question about possible diseases in the family by saying it is none of your business sure sounds like an odd response.
And finally, in response to your comment about going to church, I can tell you definitively that in order to establish a spiritual relationship with God you absolutely do not need a church. I am sure mankind has been reaching out to a higher power since long before churches ever existed. But you are also very lucky to have loving kids and a loving spouse. It's also great that the Mayo folks are hanging in there throughout this whole mystery of your health issues. I am happy to know that you are at least not alone in this.
Please take good care. And do keep talking with everyone here, regardless of MC being so rare. Even though it is not exactly what others have, there are people with similar problems. Remember Casey @chamiltonatc who had "diffuse myotonia" ? Also, another person just today described having dystonia, which sounded somewhat similar to MC. You may want to check her out by clicking here @daphne47 and reading her posts. Wishing you all the best Kim, Hank
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1 ReactionThank you and I will check out those posts.
Thank you for listening to me
Kim
Hello Everyone, just been at the Mayo and more questions than answers 😡 sorry to burden everyone but I just feel frustrated. I came home from the Mayo with I don’t know why are what is causing your pain or the malfunction in your foot. I just get tired of I see there is something but I don’t know what. It is making me feel like that is what doctors say when they don’t believe you. I wish the could literally walk in my feet, legs and use my hands! Not that I want anything wrong but my husband goes to the doctor with some kind of pain and presto he is fixed. I just needed the venting as My words don’t come out verbally for anyone to understand what my point is. Hope everyone is staying safe and Thank you again for letting me vent
Kim
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2 Reactions@kimcvi
Hi Kim, did you see the neurologist that you had been communicating with these past several months there at Mayo? You had mentioned him as someone who seemed to understand your case. What did he say specifically? Did you see other doctors, and of which specialties were they? I am surprised at their reaction to you. Did they perform any tests, and which tests were they? Did they suggest any treatment ideas? Was there any plan for follow up appointments or anything else? Forgive the barrage of questions. Feel free to answer or don't answer any that you care to. I'm just so curious at how you were handled there at Mayo. Best, Hank
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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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
Hi Hank, no your questions are fine. MC effects both sides not just one. My foot is normal just can’t bear weight on the heel as I walk a lot on my toes due to stiffness in my legs when I start walking or do too much walking. They think there’s a possibility my tendons might have shortened. I have not tried myofacial release as no one suggested it. I will bring this up to the doctors. Thank you for the suggestion. Never feel bad about asking too many questions that is how we learn and show that we care as I can tell by all your comments on all the groups you care. I thank you for that also. 😊
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2 ReactionsHi @kimcvi - You mentioned walking on your toes due to stiffness in your legs and you can't bear weight on your heels when walking. Do you have pain in the heels if you try to walk normally? Just wondering if it might be related to plantar fasciitis since that is one of the most common causes for heel pain. There is another discussion here that might interest you if it's a possible cause of your symptoms.
Plantar Fasciitis: https://connect.mayoclinic.org/discussion/plantar-fasciitis-1/
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