FMD is Functional Movement Disorder- if I understand it correctly, it is more of the "umbrella term" and FND (Functional Neurological Disorder) falls up under it... so it is a broader terminology for something that is not considered an organic movement disorder, such as Parkinson's or MS.
May I vent? I have a very hard time with my Dx of FND because of the implications of psychosomatic factors. I mean, I really have a hard time with it! I have been fighting the implication that my body sway movement was "in my head" for so long, that it really bothers me that there are many who still believe FND is something that is in your head. The easy explanation was given to me that it is a problem with the brain communicating with the nervous system, but many don't think that. I know that I shouldn't give a "D" what others think, but easier said than done. I have never even told my daughter the Dx because she is another who implied it is in my head [and she is an RN]. After reading all the posts in this discussion, I don't understand if "conversion disorders" are also FND? My neurologist never mentioned anything about that. Another thing. I was referred by my movement specialist neurologist to a Mayo neurologist to rule out an autoimmune disease that could have been attacking my brain, because of positive ANA tests, etc., and it was ruled out. But, this Mayo neuro had never discussed the FND with me, even though I told him that is what my referring neuro Dx'd me with [and I know for a fact that my referring neuro wrote him]. He refers to my body sway as my "dizziness". Every single time he has said dizziness, I have stopped him and said, "this is not dizziness, it is an actual body sway, that I cannot control, and which can be seen", but the next time we speak, he goes back to dizziness, as if I never said anything! The last time I exchanged a message with him via the portal, he said I have BPPV [the dislodged crystals in the ear), which he has NEVER said before, and which I KNOW is not my Dx because I have had it before several times in the past, and I know what those symptoms are, which are not what I have! Am I frustrated? Oh yes, I am! And, when I referred to my "involuntary body movement", which I had been referred to him for, and been seeing him for over a year, he asked me [in a responding portal message], "and, what would that body movement be?"!! Ok, thanks for letting me vent. But, now I am reading that Mayo has specialists for FND, who have numerous treatment options, and possibly there is even an FND Department? This is the absolute first time I have ever heard this, because my Mayo neuro has never told me this. Did I understand that correctly? If you can't tell, I am ready to just give up! I am tired of having my intelligence insulted by these Drs, nurses, and others in the medical profession, even my own daughter. And, besides, "it's all in my head", anyway!
P
Please don't give up... I know first hand how frustrating this can be. That you feel like you are just running around in circles... that no one truly understands or is listening. It is an absolute overload of the central nervous system. And I promise, there are doctors, specialists, and researchers who believe it- unfortunately it is a journey to get to those individuals.
To answer your question, yes. Mayo has a phenomenal department of specialists who focus on FMD/FND and there is a program to help. I was diagnosed this past January at Mayo Rochester, MN after a week of procedures and tests to rule out "organic" movement disorders such as MS and Parkinson's because my neurologist and doctors in Kentucky had no explanation for what was happening to my body- as I was declining as each day passed. While I was there at Mayo, I was validated in what my body was experiencing. For the first time, I felt seen and heard. I even had one neurology resident look me in the eye and say, "What is happening to you is real. I believe you. We will find answers for you." This interaction made me feel instantly that I had come to the right place and at the right time... At the end of my week with the Department of Neurology, my neurologist explained about FND and shared she was referring me for the BeST Program, which stands for Behavioral Shaping Therapy. I went back in March with the Department of PM&R (Physical Medicine and Rehabilitation), where I met with Physical Therapy, Occupational Therapy, and the program director for consultations. They each did an evaluation, asked me my understanding of my diagnosis and shared what the program was about. Let me tell you. They got me. They understood. And they agreed with Neurology- I was a great candidate for this program.
So I went back in May for a week. It is an outpatient program. And it was hard work. Exhausting and emotional, but worth every moment. After a day of evaluations and them seeing first hand where the breakdown in my brain and body connection was, they created a plan specific for me and my body's abilities and capabilities. For the most part, I had a PT and OT session in the morning and then another round of PT and OT in the afternoon. You have to go in with an open mind... I also experience chronic pain and I was so anxious that my body would be thrown into a flare, but they know what they are doing. They broke things down movement by movement to get my body moving in the right way again. I knew my gait was off, but actually seeing what was happening and that yes, my left side was weaker and dragging was so eye opening... I had trouble going down steps because it felt like my left leg was going to buckle. I was unable to lead off on my left foot/ leg because it would throw me into abdominal spasms. Each time they asked me to do a movement that I knew was going to trigger a spasm, we broke it down. "Rest and reset" was my mantra for the week. Deep breathing was heavily emphasized as well.
Mid-week I began to see my progress and I cried- it was so emotional to see that this could be helped. I was leading off on my left side, my walk was getting more natural again, I could recognize what to do when I felt my body tighten up and start to begin to spasm. Through OT, I was working on things I had been avoiding or nervous to do. They incorporated distraction and even some play therapy to ensure I wasn't focusing too much on movements. I engaged in scavenger hunts on the walls to lead off on my left side, I played Wii to get my legs moving without a spasm, and activity by activity I was seeing the evidence of our brain's neuroplasticity- its ability to rebuild pathways to move again in the way it is meant to move.
As I mentioned, the week was exhausting and very emotional. Towards the end of the week, I did not feel like I was ready to go yet. I had my village, I had my team of therapists and doctors who understood me, believed me and believed IN me. It was so hard to leave. But I left empowered, with a plan, and with the very transparent understanding that this could flare again, but that they had equipped me with the tools I needed to help reset my body.
So I leave you with this. If you are struggling, please, please do not stop advocating for your self. Continue to seek answers. I'm not sure of all of the rules for the board, but I am going to post the link to three podcasts. Super easy to listen to. When I heard them, I wanted to play them from the rooftops- to send them to every doctor or specialist that made me feel crazy or less than. I cannot tell you how condescendingly I was spoken to by one doctor in particular (not at Mayo). These podcasts are great to share with family and friends to shed an insight to what you are feeling and what your body is experiencing. It is a neurology round table for neurologists, but I feel they are so powerful for patients to hear their discussion to help us feel validated in our diagnosis. I especially appreciated Dr. Sarah Lidstone's discussion (8/28/23 podcast about midway through) surrounding the importance of a "symptom narrative" to help a patient understand how their body got to the point it is at currently. This is what I feel many practitioners are leaving out- which leaves patients feeling crazy, misinformed, and like there is no hope. I hope these leave you feeling as encouraged and hopeful as they did for me.
I am more than happy to try to answer any questions. I would highly suggest your neurologist refer you to PM&R or you can try to self refer online, but go to that department's page (Department of Physical Medicine and Rehabilitation). At the top of the page, there is a link that says "request an appointment" and at the bottom of the page, there is a link as well. https://www.mayoclinic.org/departments-centers/physical-medicine-rehabilitation-mayo-clinic/sections/overview/ovc-20467039
Here are the podcasts with neurologists Prof. Jon Stone, Dr. Selma Aybek, Dr. David Perez, and Dr. Sarah Lidstone- quick, 15-17 minute podcasts
Hi! I just posted on the board, in response to the post right above your's... please take a listen to the podcasts I linked. I was diagnosed in January at Mayo... happy to try to help in any way.
Please don't give up... I know first hand how frustrating this can be. That you feel like you are just running around in circles... that no one truly understands or is listening. It is an absolute overload of the central nervous system. And I promise, there are doctors, specialists, and researchers who believe it- unfortunately it is a journey to get to those individuals.
To answer your question, yes. Mayo has a phenomenal department of specialists who focus on FMD/FND and there is a program to help. I was diagnosed this past January at Mayo Rochester, MN after a week of procedures and tests to rule out "organic" movement disorders such as MS and Parkinson's because my neurologist and doctors in Kentucky had no explanation for what was happening to my body- as I was declining as each day passed. While I was there at Mayo, I was validated in what my body was experiencing. For the first time, I felt seen and heard. I even had one neurology resident look me in the eye and say, "What is happening to you is real. I believe you. We will find answers for you." This interaction made me feel instantly that I had come to the right place and at the right time... At the end of my week with the Department of Neurology, my neurologist explained about FND and shared she was referring me for the BeST Program, which stands for Behavioral Shaping Therapy. I went back in March with the Department of PM&R (Physical Medicine and Rehabilitation), where I met with Physical Therapy, Occupational Therapy, and the program director for consultations. They each did an evaluation, asked me my understanding of my diagnosis and shared what the program was about. Let me tell you. They got me. They understood. And they agreed with Neurology- I was a great candidate for this program.
So I went back in May for a week. It is an outpatient program. And it was hard work. Exhausting and emotional, but worth every moment. After a day of evaluations and them seeing first hand where the breakdown in my brain and body connection was, they created a plan specific for me and my body's abilities and capabilities. For the most part, I had a PT and OT session in the morning and then another round of PT and OT in the afternoon. You have to go in with an open mind... I also experience chronic pain and I was so anxious that my body would be thrown into a flare, but they know what they are doing. They broke things down movement by movement to get my body moving in the right way again. I knew my gait was off, but actually seeing what was happening and that yes, my left side was weaker and dragging was so eye opening... I had trouble going down steps because it felt like my left leg was going to buckle. I was unable to lead off on my left foot/ leg because it would throw me into abdominal spasms. Each time they asked me to do a movement that I knew was going to trigger a spasm, we broke it down. "Rest and reset" was my mantra for the week. Deep breathing was heavily emphasized as well.
Mid-week I began to see my progress and I cried- it was so emotional to see that this could be helped. I was leading off on my left side, my walk was getting more natural again, I could recognize what to do when I felt my body tighten up and start to begin to spasm. Through OT, I was working on things I had been avoiding or nervous to do. They incorporated distraction and even some play therapy to ensure I wasn't focusing too much on movements. I engaged in scavenger hunts on the walls to lead off on my left side, I played Wii to get my legs moving without a spasm, and activity by activity I was seeing the evidence of our brain's neuroplasticity- its ability to rebuild pathways to move again in the way it is meant to move.
As I mentioned, the week was exhausting and very emotional. Towards the end of the week, I did not feel like I was ready to go yet. I had my village, I had my team of therapists and doctors who understood me, believed me and believed IN me. It was so hard to leave. But I left empowered, with a plan, and with the very transparent understanding that this could flare again, but that they had equipped me with the tools I needed to help reset my body.
So I leave you with this. If you are struggling, please, please do not stop advocating for your self. Continue to seek answers. I'm not sure of all of the rules for the board, but I am going to post the link to three podcasts. Super easy to listen to. When I heard them, I wanted to play them from the rooftops- to send them to every doctor or specialist that made me feel crazy or less than. I cannot tell you how condescendingly I was spoken to by one doctor in particular (not at Mayo). These podcasts are great to share with family and friends to shed an insight to what you are feeling and what your body is experiencing. It is a neurology round table for neurologists, but I feel they are so powerful for patients to hear their discussion to help us feel validated in our diagnosis. I especially appreciated Dr. Sarah Lidstone's discussion (8/28/23 podcast about midway through) surrounding the importance of a "symptom narrative" to help a patient understand how their body got to the point it is at currently. This is what I feel many practitioners are leaving out- which leaves patients feeling crazy, misinformed, and like there is no hope. I hope these leave you feeling as encouraged and hopeful as they did for me.
I am more than happy to try to answer any questions. I would highly suggest your neurologist refer you to PM&R or you can try to self refer online, but go to that department's page (Department of Physical Medicine and Rehabilitation). At the top of the page, there is a link that says "request an appointment" and at the bottom of the page, there is a link as well. https://www.mayoclinic.org/departments-centers/physical-medicine-rehabilitation-mayo-clinic/sections/overview/ovc-20467039
Here are the podcasts with neurologists Prof. Jon Stone, Dr. Selma Aybek, Dr. David Perez, and Dr. Sarah Lidstone- quick, 15-17 minute podcasts
Thank you so much for all your encouragement, advice and information. I will follow your links. I must say though, that I have gone to the Mayo website, and I did use the "request an appointment" under a Dr who I thought could be right for me, but it got me nowhere. After I completed the info and submitted, I received a call back and that is where I encountered the problem with the "self-referral". I have encountered this before with Mayo. They speak of "self-referral", but I got one scheduler to even admit that there is not "self-referral" if you are already a Mayo patient. It has now been a month since I contacted my Neurologist [who the schedulers say I must go through] for a referral and another specific test, and I am still waiting! Discouraged? Oh yes, I am discouraged! And, they have worn me down. Just like all the other Drs, clinics and hospitals I have gone to. I am too old for all of this! I just can't take it anymore.
P
Please don't give up... I know first hand how frustrating this can be. That you feel like you are just running around in circles... that no one truly understands or is listening. It is an absolute overload of the central nervous system. And I promise, there are doctors, specialists, and researchers who believe it- unfortunately it is a journey to get to those individuals.
To answer your question, yes. Mayo has a phenomenal department of specialists who focus on FMD/FND and there is a program to help. I was diagnosed this past January at Mayo Rochester, MN after a week of procedures and tests to rule out "organic" movement disorders such as MS and Parkinson's because my neurologist and doctors in Kentucky had no explanation for what was happening to my body- as I was declining as each day passed. While I was there at Mayo, I was validated in what my body was experiencing. For the first time, I felt seen and heard. I even had one neurology resident look me in the eye and say, "What is happening to you is real. I believe you. We will find answers for you." This interaction made me feel instantly that I had come to the right place and at the right time... At the end of my week with the Department of Neurology, my neurologist explained about FND and shared she was referring me for the BeST Program, which stands for Behavioral Shaping Therapy. I went back in March with the Department of PM&R (Physical Medicine and Rehabilitation), where I met with Physical Therapy, Occupational Therapy, and the program director for consultations. They each did an evaluation, asked me my understanding of my diagnosis and shared what the program was about. Let me tell you. They got me. They understood. And they agreed with Neurology- I was a great candidate for this program.
So I went back in May for a week. It is an outpatient program. And it was hard work. Exhausting and emotional, but worth every moment. After a day of evaluations and them seeing first hand where the breakdown in my brain and body connection was, they created a plan specific for me and my body's abilities and capabilities. For the most part, I had a PT and OT session in the morning and then another round of PT and OT in the afternoon. You have to go in with an open mind... I also experience chronic pain and I was so anxious that my body would be thrown into a flare, but they know what they are doing. They broke things down movement by movement to get my body moving in the right way again. I knew my gait was off, but actually seeing what was happening and that yes, my left side was weaker and dragging was so eye opening... I had trouble going down steps because it felt like my left leg was going to buckle. I was unable to lead off on my left foot/ leg because it would throw me into abdominal spasms. Each time they asked me to do a movement that I knew was going to trigger a spasm, we broke it down. "Rest and reset" was my mantra for the week. Deep breathing was heavily emphasized as well.
Mid-week I began to see my progress and I cried- it was so emotional to see that this could be helped. I was leading off on my left side, my walk was getting more natural again, I could recognize what to do when I felt my body tighten up and start to begin to spasm. Through OT, I was working on things I had been avoiding or nervous to do. They incorporated distraction and even some play therapy to ensure I wasn't focusing too much on movements. I engaged in scavenger hunts on the walls to lead off on my left side, I played Wii to get my legs moving without a spasm, and activity by activity I was seeing the evidence of our brain's neuroplasticity- its ability to rebuild pathways to move again in the way it is meant to move.
As I mentioned, the week was exhausting and very emotional. Towards the end of the week, I did not feel like I was ready to go yet. I had my village, I had my team of therapists and doctors who understood me, believed me and believed IN me. It was so hard to leave. But I left empowered, with a plan, and with the very transparent understanding that this could flare again, but that they had equipped me with the tools I needed to help reset my body.
So I leave you with this. If you are struggling, please, please do not stop advocating for your self. Continue to seek answers. I'm not sure of all of the rules for the board, but I am going to post the link to three podcasts. Super easy to listen to. When I heard them, I wanted to play them from the rooftops- to send them to every doctor or specialist that made me feel crazy or less than. I cannot tell you how condescendingly I was spoken to by one doctor in particular (not at Mayo). These podcasts are great to share with family and friends to shed an insight to what you are feeling and what your body is experiencing. It is a neurology round table for neurologists, but I feel they are so powerful for patients to hear their discussion to help us feel validated in our diagnosis. I especially appreciated Dr. Sarah Lidstone's discussion (8/28/23 podcast about midway through) surrounding the importance of a "symptom narrative" to help a patient understand how their body got to the point it is at currently. This is what I feel many practitioners are leaving out- which leaves patients feeling crazy, misinformed, and like there is no hope. I hope these leave you feeling as encouraged and hopeful as they did for me.
I am more than happy to try to answer any questions. I would highly suggest your neurologist refer you to PM&R or you can try to self refer online, but go to that department's page (Department of Physical Medicine and Rehabilitation). At the top of the page, there is a link that says "request an appointment" and at the bottom of the page, there is a link as well. https://www.mayoclinic.org/departments-centers/physical-medicine-rehabilitation-mayo-clinic/sections/overview/ovc-20467039
Here are the podcasts with neurologists Prof. Jon Stone, Dr. Selma Aybek, Dr. David Perez, and Dr. Sarah Lidstone- quick, 15-17 minute podcasts
Pray, tell me, with all that Mayo has to offer for FND/FMD, why did my Mayo neurologist not refer me to these specialists?? This is what I am saying. I just can't find a Dr who really gives a Damn [sorry, but the language fits!]! I still have more of these links you provided to follow, but I have been very sick. I will get to it, though.
P
Pray, tell me, with all that Mayo has to offer for FND/FMD, why did my Mayo neurologist not refer me to these specialists?? This is what I am saying. I just can't find a Dr who really gives a Damn [sorry, but the language fits!]! I still have more of these links you provided to follow, but I have been very sick. I will get to it, though.
P
Thank you so much for all your encouragement, advice and information. I will follow your links. I must say though, that I have gone to the Mayo website, and I did use the "request an appointment" under a Dr who I thought could be right for me, but it got me nowhere. After I completed the info and submitted, I received a call back and that is where I encountered the problem with the "self-referral". I have encountered this before with Mayo. They speak of "self-referral", but I got one scheduler to even admit that there is not "self-referral" if you are already a Mayo patient. It has now been a month since I contacted my Neurologist [who the schedulers say I must go through] for a referral and another specific test, and I am still waiting! Discouraged? Oh yes, I am discouraged! And, they have worn me down. Just like all the other Drs, clinics and hospitals I have gone to. I am too old for all of this! I just can't take it anymore.
P
Hello @pkh3381. I am sorry you are having difficulty with your appointment request. From what I've read from your comments, you are seeing a neurologist at Mayo presently and you are looking for a referral to a specialist to explore FND. Have you specifically asked to see a specialist? If yes, and that wasn't productive, perhaps it would be worth requesting an in-house second opinion from another neurologist. Is this something you would feel comfortable requesting?
Please don't give up... I know first hand how frustrating this can be. That you feel like you are just running around in circles... that no one truly understands or is listening. It is an absolute overload of the central nervous system. And I promise, there are doctors, specialists, and researchers who believe it- unfortunately it is a journey to get to those individuals.
To answer your question, yes. Mayo has a phenomenal department of specialists who focus on FMD/FND and there is a program to help. I was diagnosed this past January at Mayo Rochester, MN after a week of procedures and tests to rule out "organic" movement disorders such as MS and Parkinson's because my neurologist and doctors in Kentucky had no explanation for what was happening to my body- as I was declining as each day passed. While I was there at Mayo, I was validated in what my body was experiencing. For the first time, I felt seen and heard. I even had one neurology resident look me in the eye and say, "What is happening to you is real. I believe you. We will find answers for you." This interaction made me feel instantly that I had come to the right place and at the right time... At the end of my week with the Department of Neurology, my neurologist explained about FND and shared she was referring me for the BeST Program, which stands for Behavioral Shaping Therapy. I went back in March with the Department of PM&R (Physical Medicine and Rehabilitation), where I met with Physical Therapy, Occupational Therapy, and the program director for consultations. They each did an evaluation, asked me my understanding of my diagnosis and shared what the program was about. Let me tell you. They got me. They understood. And they agreed with Neurology- I was a great candidate for this program.
So I went back in May for a week. It is an outpatient program. And it was hard work. Exhausting and emotional, but worth every moment. After a day of evaluations and them seeing first hand where the breakdown in my brain and body connection was, they created a plan specific for me and my body's abilities and capabilities. For the most part, I had a PT and OT session in the morning and then another round of PT and OT in the afternoon. You have to go in with an open mind... I also experience chronic pain and I was so anxious that my body would be thrown into a flare, but they know what they are doing. They broke things down movement by movement to get my body moving in the right way again. I knew my gait was off, but actually seeing what was happening and that yes, my left side was weaker and dragging was so eye opening... I had trouble going down steps because it felt like my left leg was going to buckle. I was unable to lead off on my left foot/ leg because it would throw me into abdominal spasms. Each time they asked me to do a movement that I knew was going to trigger a spasm, we broke it down. "Rest and reset" was my mantra for the week. Deep breathing was heavily emphasized as well.
Mid-week I began to see my progress and I cried- it was so emotional to see that this could be helped. I was leading off on my left side, my walk was getting more natural again, I could recognize what to do when I felt my body tighten up and start to begin to spasm. Through OT, I was working on things I had been avoiding or nervous to do. They incorporated distraction and even some play therapy to ensure I wasn't focusing too much on movements. I engaged in scavenger hunts on the walls to lead off on my left side, I played Wii to get my legs moving without a spasm, and activity by activity I was seeing the evidence of our brain's neuroplasticity- its ability to rebuild pathways to move again in the way it is meant to move.
As I mentioned, the week was exhausting and very emotional. Towards the end of the week, I did not feel like I was ready to go yet. I had my village, I had my team of therapists and doctors who understood me, believed me and believed IN me. It was so hard to leave. But I left empowered, with a plan, and with the very transparent understanding that this could flare again, but that they had equipped me with the tools I needed to help reset my body.
So I leave you with this. If you are struggling, please, please do not stop advocating for your self. Continue to seek answers. I'm not sure of all of the rules for the board, but I am going to post the link to three podcasts. Super easy to listen to. When I heard them, I wanted to play them from the rooftops- to send them to every doctor or specialist that made me feel crazy or less than. I cannot tell you how condescendingly I was spoken to by one doctor in particular (not at Mayo). These podcasts are great to share with family and friends to shed an insight to what you are feeling and what your body is experiencing. It is a neurology round table for neurologists, but I feel they are so powerful for patients to hear their discussion to help us feel validated in our diagnosis. I especially appreciated Dr. Sarah Lidstone's discussion (8/28/23 podcast about midway through) surrounding the importance of a "symptom narrative" to help a patient understand how their body got to the point it is at currently. This is what I feel many practitioners are leaving out- which leaves patients feeling crazy, misinformed, and like there is no hope. I hope these leave you feeling as encouraged and hopeful as they did for me.
I am more than happy to try to answer any questions. I would highly suggest your neurologist refer you to PM&R or you can try to self refer online, but go to that department's page (Department of Physical Medicine and Rehabilitation). At the top of the page, there is a link that says "request an appointment" and at the bottom of the page, there is a link as well. https://www.mayoclinic.org/departments-centers/physical-medicine-rehabilitation-mayo-clinic/sections/overview/ovc-20467039
Here are the podcasts with neurologists Prof. Jon Stone, Dr. Selma Aybek, Dr. David Perez, and Dr. Sarah Lidstone- quick, 15-17 minute podcasts
Colleen, I have finished listening to the attachments you provided and, if I can be totally honest, I continue to hear undertones of "psychological, psychiatric, related to stress, related to trauma", etc., etc., which does not help me in accepting the Dx of FND. I had childhood trauma, but I didn't have any of my symptoms until in my 70's. I have had trauma throughout my life, but I didn't have any stressful, traumatic event preceding the onset of symptoms. Problems with my gait were noted years before my symptoms began, but nothing was pursued, only noted. I could go on, but the bottom line is that I still see Drs and therapists thinking of this as related to psychological or psychiatric conditions, and I object to that strongly. I do not mean to offend you if your attempts to help me, please don't think that. I am just not convinced that what I have is related to stress, etc. And it is offensive to me that the medical profession, though seemingly trying to overshadow the psychosomatic indications of FND, still has that underlying belief. I am probably oversensitive to this because of the many hurtful things said to me, or implied. Thank you for the information, I really do appreciate it. I guess I am hopelessly oversensitive.
P
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FMD is Functional Movement Disorder- if I understand it correctly, it is more of the "umbrella term" and FND (Functional Neurological Disorder) falls up under it... so it is a broader terminology for something that is not considered an organic movement disorder, such as Parkinson's or MS.
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1 ReactionPlease don't give up... I know first hand how frustrating this can be. That you feel like you are just running around in circles... that no one truly understands or is listening. It is an absolute overload of the central nervous system. And I promise, there are doctors, specialists, and researchers who believe it- unfortunately it is a journey to get to those individuals.
To answer your question, yes. Mayo has a phenomenal department of specialists who focus on FMD/FND and there is a program to help. I was diagnosed this past January at Mayo Rochester, MN after a week of procedures and tests to rule out "organic" movement disorders such as MS and Parkinson's because my neurologist and doctors in Kentucky had no explanation for what was happening to my body- as I was declining as each day passed. While I was there at Mayo, I was validated in what my body was experiencing. For the first time, I felt seen and heard. I even had one neurology resident look me in the eye and say, "What is happening to you is real. I believe you. We will find answers for you." This interaction made me feel instantly that I had come to the right place and at the right time... At the end of my week with the Department of Neurology, my neurologist explained about FND and shared she was referring me for the BeST Program, which stands for Behavioral Shaping Therapy. I went back in March with the Department of PM&R (Physical Medicine and Rehabilitation), where I met with Physical Therapy, Occupational Therapy, and the program director for consultations. They each did an evaluation, asked me my understanding of my diagnosis and shared what the program was about. Let me tell you. They got me. They understood. And they agreed with Neurology- I was a great candidate for this program.
So I went back in May for a week. It is an outpatient program. And it was hard work. Exhausting and emotional, but worth every moment. After a day of evaluations and them seeing first hand where the breakdown in my brain and body connection was, they created a plan specific for me and my body's abilities and capabilities. For the most part, I had a PT and OT session in the morning and then another round of PT and OT in the afternoon. You have to go in with an open mind... I also experience chronic pain and I was so anxious that my body would be thrown into a flare, but they know what they are doing. They broke things down movement by movement to get my body moving in the right way again. I knew my gait was off, but actually seeing what was happening and that yes, my left side was weaker and dragging was so eye opening... I had trouble going down steps because it felt like my left leg was going to buckle. I was unable to lead off on my left foot/ leg because it would throw me into abdominal spasms. Each time they asked me to do a movement that I knew was going to trigger a spasm, we broke it down. "Rest and reset" was my mantra for the week. Deep breathing was heavily emphasized as well.
Mid-week I began to see my progress and I cried- it was so emotional to see that this could be helped. I was leading off on my left side, my walk was getting more natural again, I could recognize what to do when I felt my body tighten up and start to begin to spasm. Through OT, I was working on things I had been avoiding or nervous to do. They incorporated distraction and even some play therapy to ensure I wasn't focusing too much on movements. I engaged in scavenger hunts on the walls to lead off on my left side, I played Wii to get my legs moving without a spasm, and activity by activity I was seeing the evidence of our brain's neuroplasticity- its ability to rebuild pathways to move again in the way it is meant to move.
As I mentioned, the week was exhausting and very emotional. Towards the end of the week, I did not feel like I was ready to go yet. I had my village, I had my team of therapists and doctors who understood me, believed me and believed IN me. It was so hard to leave. But I left empowered, with a plan, and with the very transparent understanding that this could flare again, but that they had equipped me with the tools I needed to help reset my body.
So I leave you with this. If you are struggling, please, please do not stop advocating for your self. Continue to seek answers. I'm not sure of all of the rules for the board, but I am going to post the link to three podcasts. Super easy to listen to. When I heard them, I wanted to play them from the rooftops- to send them to every doctor or specialist that made me feel crazy or less than. I cannot tell you how condescendingly I was spoken to by one doctor in particular (not at Mayo). These podcasts are great to share with family and friends to shed an insight to what you are feeling and what your body is experiencing. It is a neurology round table for neurologists, but I feel they are so powerful for patients to hear their discussion to help us feel validated in our diagnosis. I especially appreciated Dr. Sarah Lidstone's discussion (8/28/23 podcast about midway through) surrounding the importance of a "symptom narrative" to help a patient understand how their body got to the point it is at currently. This is what I feel many practitioners are leaving out- which leaves patients feeling crazy, misinformed, and like there is no hope. I hope these leave you feeling as encouraged and hopeful as they did for me.
I am more than happy to try to answer any questions. I would highly suggest your neurologist refer you to PM&R or you can try to self refer online, but go to that department's page (Department of Physical Medicine and Rehabilitation). At the top of the page, there is a link that says "request an appointment" and at the bottom of the page, there is a link as well.
https://www.mayoclinic.org/departments-centers/physical-medicine-rehabilitation-mayo-clinic/sections/overview/ovc-20467039
Here are the podcasts with neurologists Prof. Jon Stone, Dr. Selma Aybek, Dr. David Perez, and Dr. Sarah Lidstone- quick, 15-17 minute podcasts
Neurology Today
August 3, 2023: FND Diagnosis and New Phenotypes
https://neurology.libsyn.com/website/an-updated-round-table-discussion-on-fnd-diagnosis-of-fnd-and-new-phenotypes
August 28, 2023: How and Why Does FND Occur
https://neurology.libsyn.com/website/an-updated-round-table-discussion-on-fnd-how-and-why-does-fnd-occur
September 14, 2023: FND- Sharing a Diagnosis and Treatment
https://neurology.libsyn.com/website/an-updated-round-table-discussion-on-fnd-sharing-a-diagnosis-and-treatment
Mayo Clinic Podcast
Dr. Jeffrey M. Thompson: The BeST Approach to Functional Movement Disorders
https://simplypmr.podbean.com/e/the-best-approach-to-functional-movement-disorders/
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2 ReactionsHi! I just posted on the board, in response to the post right above your's... please take a listen to the podcasts I linked. I was diagnosed in January at Mayo... happy to try to help in any way.
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2 ReactionsThank you so much for all your encouragement, advice and information. I will follow your links. I must say though, that I have gone to the Mayo website, and I did use the "request an appointment" under a Dr who I thought could be right for me, but it got me nowhere. After I completed the info and submitted, I received a call back and that is where I encountered the problem with the "self-referral". I have encountered this before with Mayo. They speak of "self-referral", but I got one scheduler to even admit that there is not "self-referral" if you are already a Mayo patient. It has now been a month since I contacted my Neurologist [who the schedulers say I must go through] for a referral and another specific test, and I am still waiting! Discouraged? Oh yes, I am discouraged! And, they have worn me down. Just like all the other Drs, clinics and hospitals I have gone to. I am too old for all of this! I just can't take it anymore.
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Functional Neurological Disease
Pray, tell me, with all that Mayo has to offer for FND/FMD, why did my Mayo neurologist not refer me to these specialists?? This is what I am saying. I just can't find a Dr who really gives a Damn [sorry, but the language fits!]! I still have more of these links you provided to follow, but I have been very sick. I will get to it, though.
P
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3 ReactionsIf there is Motion specialist MD where you live I would suggest you might try seeing one. That That is who I saw and was finally able to get help.
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1 ReactionYes, thank you, a movement neurologyspecialist is who referred me to Mayo, and I still see him, but I am not very satisfied.
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Hello @pkh3381. I am sorry you are having difficulty with your appointment request. From what I've read from your comments, you are seeing a neurologist at Mayo presently and you are looking for a referral to a specialist to explore FND. Have you specifically asked to see a specialist? If yes, and that wasn't productive, perhaps it would be worth requesting an in-house second opinion from another neurologist. Is this something you would feel comfortable requesting?
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1 ReactionColleen, I have finished listening to the attachments you provided and, if I can be totally honest, I continue to hear undertones of "psychological, psychiatric, related to stress, related to trauma", etc., etc., which does not help me in accepting the Dx of FND. I had childhood trauma, but I didn't have any of my symptoms until in my 70's. I have had trauma throughout my life, but I didn't have any stressful, traumatic event preceding the onset of symptoms. Problems with my gait were noted years before my symptoms began, but nothing was pursued, only noted. I could go on, but the bottom line is that I still see Drs and therapists thinking of this as related to psychological or psychiatric conditions, and I object to that strongly. I do not mean to offend you if your attempts to help me, please don't think that. I am just not convinced that what I have is related to stress, etc. And it is offensive to me that the medical profession, though seemingly trying to overshadow the psychosomatic indications of FND, still has that underlying belief. I am probably oversensitive to this because of the many hurtful things said to me, or implied. Thank you for the information, I really do appreciate it. I guess I am hopelessly oversensitive.
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