Hello Everyone, hope you are all doing well😊 Me well getting frustrated with Doctors😡 The PA that is seeing me for my foot at the Mayo has not returned my message I sent him over a week ago. I know he or somebody read it. Last time I called and explained he isn’t getting back to me after a month and a half so the put me through to him and was able to talk to him. No apologies or explanation on why he didn’t get back to me. (How Rude is that) Not sure how to approach this, still don’t know what I am suppose to do!! This is torturing me as I want to give him a piece of my mind but that won’t solve anything. If I complain (nicely) I’m afraid that the Mayo won’t want to see me anymore🙁🙁🙁. This really isn’t helping my anxiety and then my anxiety goes up I cannot move very well. Such a vicious circle 🙄
Hello Everyone, hope you are all doing well😊 Me well getting frustrated with Doctors😡 The PA that is seeing me for my foot at the Mayo has not returned my message I sent him over a week ago. I know he or somebody read it. Last time I called and explained he isn’t getting back to me after a month and a half so the put me through to him and was able to talk to him. No apologies or explanation on why he didn’t get back to me. (How Rude is that) Not sure how to approach this, still don’t know what I am suppose to do!! This is torturing me as I want to give him a piece of my mind but that won’t solve anything. If I complain (nicely) I’m afraid that the Mayo won’t want to see me anymore🙁🙁🙁. This really isn’t helping my anxiety and then my anxiety goes up I cannot move very well. Such a vicious circle 🙄
@kimcvi, I know that can be frustrating to say the least when your messages have not been returned and you are trying to get answers. I encourage you to call the Office of Patient Experience at Mayo Clinic.
Office of Patient Experience
8 a.m. to 5 p.m., Monday - Friday
507-284-4988
I have a form of a myotonic dystrophy (MD II) which causes similar muscular issues you are facing (pain, weakness, muscles not relaxing - staying tensed) I also have pain issues that aren’t easily managed because of it.
I also have some other conditions that makes the meds list I can take short.
My neurologist (Mayo) tried Baclofen but we didn’t have much luck.
I know it is not possible for many folks to find a way to stretch. I had some home health care last year. They showed me ways to stretch even if you cant get out of bed. I have found that a good daily stretching routine has helped with mobility and some pain. It can help with the stiffness and not wanting to relax the muscle which likes to stay contracted.
It is definitely hard to find docs that deal with these conditions - many have never heard of it.
Here is a link - which you have already looked at but might be a good starting point for finding something in your area Ike an
MDA Care Center. Mayo here in Jacksonville has one. The MDA.org site - https://www.mda.org/disease/myotonia-congenita has some search tools to find them in your area.
Hope this might help.
I have a form of a myotonic dystrophy (MD II) which causes similar muscular issues you are facing (pain, weakness, muscles not relaxing - staying tensed) I also have pain issues that aren’t easily managed because of it.
I also have some other conditions that makes the meds list I can take short.
My neurologist (Mayo) tried Baclofen but we didn’t have much luck.
I know it is not possible for many folks to find a way to stretch. I had some home health care last year. They showed me ways to stretch even if you cant get out of bed. I have found that a good daily stretching routine has helped with mobility and some pain. It can help with the stiffness and not wanting to relax the muscle which likes to stay contracted.
It is definitely hard to find docs that deal with these conditions - many have never heard of it.
Here is a link - which you have already looked at but might be a good starting point for finding something in your area Ike an
MDA Care Center. Mayo here in Jacksonville has one. The MDA.org site - https://www.mda.org/disease/myotonia-congenita has some search tools to find them in your area.
Hope this might help.
Hello @larryh123, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing your story and what helps you, especially the tip about ways to stretch even when you can't get out of bed and finding a daily routine to help with mobility and some pain management.
I posted the link to the MDA.org website so that it appears in your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam, but will help members locate an MDA Care Center near them.
Can you share what you were searching for when you found Connect?
Hello @larryh123, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing your story and what helps you, especially the tip about ways to stretch even when you can't get out of bed and finding a daily routine to help with mobility and some pain management.
I posted the link to the MDA.org website so that it appears in your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam, but will help members locate an MDA Care Center near them.
Can you share what you were searching for when you found Connect?
Hello - hope you are doing well. I was asked to register via the connect website for a webinar. During the webinar they talked about all of the resources that are coming up on Connect so thought I’d check it out. I do understand an appreciate the URL restriction and agree it is in the communities best interest.
Hello:
Hope you are doing well. My condition is similar. I have myotonic dystrophy type 2(genetically confirmed)Both myotonic congenita and myotonic dystrophy fall into the muscular dystrophy umbrella. You already know that - it is geared more toward the folks that aren’t familiar with the myotonic diseases.
Have you checked into the MDA (muscular dystrophy association) clinic at Mayo? The program is excellent and helped me out immensely. They can work with pain management, bio-feedback - just a overview of all that they can help with. You will work with OT and PT to help with strategies for daily living, exercise routines, stretching routines, diet.
The docs you will meet with are specialists in different types of muscular dystrophy.
Which state are you in? If you are in Florida, I can give you the name of the neurologist that i work with at Mayo.
Pain management can be tricky as there are not a lot of normal pain meds that are effective with the type of pain we feel. Also relief from the muscle cramps are very difficult to manage because of their transient nature.
I tried metaxiline which couldn’t tame the pain. We titrated to the max dose and it gave me hallucinations.
Muscle cramps in my case are complicated because of Parkinsonism.
Do you find that you can trigger a cramp from running into something (I’m becoming a bit clumsy). - even lightly you get a cramp? When I am playing with my grandson he will give me an enthusiastic thump on my shoulder and cramp city. These are not very hard impacts.
The only thing that helps for me is a good ratio product of CBD with a very small amount of THC. In my case - i utilize a 12.5 part CBD to 1 part THC product that helps with the pain and muscle cramps along with a plethora of other things like mood, flexibility and sleep. This also helps with the Parkinsonism.
My neurologist says - if it works then - utilize it. We both know there is no cure and whatever treatment we get is to make life more palatable.
Sorry to not be able to give more of a definite answer as to what works - the choices are limited.
If you find something that works for you - please share it.
Hello:
Hope you are doing well. My condition is similar. I have myotonic dystrophy type 2(genetically confirmed)Both myotonic congenita and myotonic dystrophy fall into the muscular dystrophy umbrella. You already know that - it is geared more toward the folks that aren’t familiar with the myotonic diseases.
Have you checked into the MDA (muscular dystrophy association) clinic at Mayo? The program is excellent and helped me out immensely. They can work with pain management, bio-feedback - just a overview of all that they can help with. You will work with OT and PT to help with strategies for daily living, exercise routines, stretching routines, diet.
The docs you will meet with are specialists in different types of muscular dystrophy.
Which state are you in? If you are in Florida, I can give you the name of the neurologist that i work with at Mayo.
Pain management can be tricky as there are not a lot of normal pain meds that are effective with the type of pain we feel. Also relief from the muscle cramps are very difficult to manage because of their transient nature.
I tried metaxiline which couldn’t tame the pain. We titrated to the max dose and it gave me hallucinations.
Muscle cramps in my case are complicated because of Parkinsonism.
Do you find that you can trigger a cramp from running into something (I’m becoming a bit clumsy). - even lightly you get a cramp? When I am playing with my grandson he will give me an enthusiastic thump on my shoulder and cramp city. These are not very hard impacts.
The only thing that helps for me is a good ratio product of CBD with a very small amount of THC. In my case - i utilize a 12.5 part CBD to 1 part THC product that helps with the pain and muscle cramps along with a plethora of other things like mood, flexibility and sleep. This also helps with the Parkinsonism.
My neurologist says - if it works then - utilize it. We both know there is no cure and whatever treatment we get is to make life more palatable.
Sorry to not be able to give more of a definite answer as to what works - the choices are limited.
If you find something that works for you - please share it.
Hi I was just giving up hope that I wouldn’t find someone similar to my disease. I haven’t logged in for sometime as no one seems to know what to say. I was gonna unsubscribe until I saw your message🥰
I have been to the MDA facility where I live but the doctor dismissed me because apparently I wasn’t as bad as the people who have Myotonia Dystrophy. I explained to him that walking is a issue, I have been losing my balance and chronic pain. I was so upset with him that I cried on my way home.
The Neurologist I have at the Mayo has been Wonderful but there is only so much he can do as I cannot be there on continually as they are 4 hours away. None of my doctors here at home don’t know anything about this but trying to help through the advice of the Mayo. I saw one doctor here that is well adverse in Myotonia but she wouldn’t test me but diagnosed me with Myotonia Dystrophy type 2. That’s when I went to the Mayo and did 3 genetic tests. Which 2 proved MC and ruled out Myotonia Dystrophy. I have been on most of the convulsion medications and allergic to them but the Gabapentin which seems to work a little but I still have severe pain in my thighs.
I am so glad that you responded hopefully we can talk again😊
Hi I was just giving up hope that I wouldn’t find someone similar to my disease. I haven’t logged in for sometime as no one seems to know what to say. I was gonna unsubscribe until I saw your message🥰
I have been to the MDA facility where I live but the doctor dismissed me because apparently I wasn’t as bad as the people who have Myotonia Dystrophy. I explained to him that walking is a issue, I have been losing my balance and chronic pain. I was so upset with him that I cried on my way home.
The Neurologist I have at the Mayo has been Wonderful but there is only so much he can do as I cannot be there on continually as they are 4 hours away. None of my doctors here at home don’t know anything about this but trying to help through the advice of the Mayo. I saw one doctor here that is well adverse in Myotonia but she wouldn’t test me but diagnosed me with Myotonia Dystrophy type 2. That’s when I went to the Mayo and did 3 genetic tests. Which 2 proved MC and ruled out Myotonia Dystrophy. I have been on most of the convulsion medications and allergic to them but the Gabapentin which seems to work a little but I still have severe pain in my thighs.
I am so glad that you responded hopefully we can talk again😊
Hello:
I totally understand how frustrating and sometimes feeling like there isn't anyone that will listen creeps in. I understand your frustration with getting down to what the problem actually is.
Before I was diagnosed with MD 2, I didn't think a lot of the symptoms and we thought it was tied to parknosinism. My first weird thing that happened its when driving (which I am not allowed to do anymore ) I tried to let go of the steering wheel and my grip didn't release very well - grip myotonia. Then I noticed a trend in my bloodwork. I noticed a constant rise of CK levels over a 2 year period. When I questioned this an appointment I was immediately made to have further testing which came back as abnormal with suspected MD 2. Genetic testing confirmed.
I think I know the answer but I need to mention it anyway. have you looked at the mda website?- You can locate mda clinics and can find some info on docs. https://www.mda.org/care/mda-care-centers
Another great source of info: https://www.myotonic.org/muscle-cdm
If you don't mind me asking - which Mayo do you go to?
Stay positive.
Smile - they will wonder what you are up to!!!!
I'm not sure how private messaging works here - but if you want to - feel free to reach out and we can chat more privately if you wish.
Hello:
I totally understand how frustrating and sometimes feeling like there isn't anyone that will listen creeps in. I understand your frustration with getting down to what the problem actually is.
Before I was diagnosed with MD 2, I didn't think a lot of the symptoms and we thought it was tied to parknosinism. My first weird thing that happened its when driving (which I am not allowed to do anymore ) I tried to let go of the steering wheel and my grip didn't release very well - grip myotonia. Then I noticed a trend in my bloodwork. I noticed a constant rise of CK levels over a 2 year period. When I questioned this an appointment I was immediately made to have further testing which came back as abnormal with suspected MD 2. Genetic testing confirmed.
I think I know the answer but I need to mention it anyway. have you looked at the mda website?- You can locate mda clinics and can find some info on docs. https://www.mda.org/care/mda-care-centers
Another great source of info: https://www.myotonic.org/muscle-cdm
If you don't mind me asking - which Mayo do you go to?
Stay positive.
Smile - they will wonder what you are up to!!!!
I'm not sure how private messaging works here - but if you want to - feel free to reach out and we can chat more privately if you wish.
Connect
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Hello Everyone, hope you are all doing well😊 Me well getting frustrated with Doctors😡 The PA that is seeing me for my foot at the Mayo has not returned my message I sent him over a week ago. I know he or somebody read it. Last time I called and explained he isn’t getting back to me after a month and a half so the put me through to him and was able to talk to him. No apologies or explanation on why he didn’t get back to me. (How Rude is that) Not sure how to approach this, still don’t know what I am suppose to do!! This is torturing me as I want to give him a piece of my mind but that won’t solve anything. If I complain (nicely) I’m afraid that the Mayo won’t want to see me anymore🙁🙁🙁. This really isn’t helping my anxiety and then my anxiety goes up I cannot move very well. Such a vicious circle 🙄
@kimcvi, I know that can be frustrating to say the least when your messages have not been returned and you are trying to get answers. I encourage you to call the Office of Patient Experience at Mayo Clinic.
Office of Patient Experience
8 a.m. to 5 p.m., Monday - Friday
507-284-4988
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Helpful -
Hug
3 ReactionsThank you, I will give them a call. Hope they can or will help me.
Kim🤞🤞
I have a form of a myotonic dystrophy (MD II) which causes similar muscular issues you are facing (pain, weakness, muscles not relaxing - staying tensed) I also have pain issues that aren’t easily managed because of it.
I also have some other conditions that makes the meds list I can take short.
My neurologist (Mayo) tried Baclofen but we didn’t have much luck.
I know it is not possible for many folks to find a way to stretch. I had some home health care last year. They showed me ways to stretch even if you cant get out of bed. I have found that a good daily stretching routine has helped with mobility and some pain. It can help with the stiffness and not wanting to relax the muscle which likes to stay contracted.
It is definitely hard to find docs that deal with these conditions - many have never heard of it.
Here is a link - which you have already looked at but might be a good starting point for finding something in your area Ike an
MDA Care Center. Mayo here in Jacksonville has one. The MDA.org site - https://www.mda.org/disease/myotonia-congenita has some search tools to find them in your area.
Hope this might help.
-
Like -
Helpful -
Hug
1 ReactionHello @larryh123, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing your story and what helps you, especially the tip about ways to stretch even when you can't get out of bed and finding a daily routine to help with mobility and some pain management.
I posted the link to the MDA.org website so that it appears in your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam, but will help members locate an MDA Care Center near them.
Can you share what you were searching for when you found Connect?
-
Like -
Helpful -
Hug
1 ReactionHello - hope you are doing well. I was asked to register via the connect website for a webinar. During the webinar they talked about all of the resources that are coming up on Connect so thought I’d check it out. I do understand an appreciate the URL restriction and agree it is in the communities best interest.
-
Like -
Helpful -
Hug
2 ReactionsHello:
Hope you are doing well. My condition is similar. I have myotonic dystrophy type 2(genetically confirmed)Both myotonic congenita and myotonic dystrophy fall into the muscular dystrophy umbrella. You already know that - it is geared more toward the folks that aren’t familiar with the myotonic diseases.
Have you checked into the MDA (muscular dystrophy association) clinic at Mayo? The program is excellent and helped me out immensely. They can work with pain management, bio-feedback - just a overview of all that they can help with. You will work with OT and PT to help with strategies for daily living, exercise routines, stretching routines, diet.
The docs you will meet with are specialists in different types of muscular dystrophy.
Which state are you in? If you are in Florida, I can give you the name of the neurologist that i work with at Mayo.
Pain management can be tricky as there are not a lot of normal pain meds that are effective with the type of pain we feel. Also relief from the muscle cramps are very difficult to manage because of their transient nature.
I tried metaxiline which couldn’t tame the pain. We titrated to the max dose and it gave me hallucinations.
Muscle cramps in my case are complicated because of Parkinsonism.
Do you find that you can trigger a cramp from running into something (I’m becoming a bit clumsy). - even lightly you get a cramp? When I am playing with my grandson he will give me an enthusiastic thump on my shoulder and cramp city. These are not very hard impacts.
The only thing that helps for me is a good ratio product of CBD with a very small amount of THC. In my case - i utilize a 12.5 part CBD to 1 part THC product that helps with the pain and muscle cramps along with a plethora of other things like mood, flexibility and sleep. This also helps with the Parkinsonism.
My neurologist says - if it works then - utilize it. We both know there is no cure and whatever treatment we get is to make life more palatable.
Sorry to not be able to give more of a definite answer as to what works - the choices are limited.
If you find something that works for you - please share it.
Stay safe and well.
-
Like -
Helpful -
Hug
2 ReactionsHi I was just giving up hope that I wouldn’t find someone similar to my disease. I haven’t logged in for sometime as no one seems to know what to say. I was gonna unsubscribe until I saw your message🥰
I have been to the MDA facility where I live but the doctor dismissed me because apparently I wasn’t as bad as the people who have Myotonia Dystrophy. I explained to him that walking is a issue, I have been losing my balance and chronic pain. I was so upset with him that I cried on my way home.
The Neurologist I have at the Mayo has been Wonderful but there is only so much he can do as I cannot be there on continually as they are 4 hours away. None of my doctors here at home don’t know anything about this but trying to help through the advice of the Mayo. I saw one doctor here that is well adverse in Myotonia but she wouldn’t test me but diagnosed me with Myotonia Dystrophy type 2. That’s when I went to the Mayo and did 3 genetic tests. Which 2 proved MC and ruled out Myotonia Dystrophy. I have been on most of the convulsion medications and allergic to them but the Gabapentin which seems to work a little but I still have severe pain in my thighs.
I am so glad that you responded hopefully we can talk again😊
-
Like -
Helpful -
Hug
2 ReactionsHello:
I totally understand how frustrating and sometimes feeling like there isn't anyone that will listen creeps in. I understand your frustration with getting down to what the problem actually is.
Before I was diagnosed with MD 2, I didn't think a lot of the symptoms and we thought it was tied to parknosinism. My first weird thing that happened its when driving (which I am not allowed to do anymore ) I tried to let go of the steering wheel and my grip didn't release very well - grip myotonia. Then I noticed a trend in my bloodwork. I noticed a constant rise of CK levels over a 2 year period. When I questioned this an appointment I was immediately made to have further testing which came back as abnormal with suspected MD 2. Genetic testing confirmed.
I think I know the answer but I need to mention it anyway. have you looked at the mda website?- You can locate mda clinics and can find some info on docs.
https://www.mda.org/care/mda-care-centers
Another great source of info: https://www.myotonic.org/muscle-cdm
If you don't mind me asking - which Mayo do you go to?
Stay positive.
Smile - they will wonder what you are up to!!!!
I'm not sure how private messaging works here - but if you want to - feel free to reach out and we can chat more privately if you wish.
Larry
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Like -
Helpful -
Hug
1 ReactionLarry @larryh123 - How to Send a Private Message: https://connect.mayoclinic.org/get-started-on-connect/#send-private-message. You can see all of the other step by step "how to" information for Connect in the Get Started on Connect guide - link in the footer of every page on Connect.
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