Yes, I have been diagnosed with FND. I am afffected by a involultary body sway which has forced me to use a cane and walker. I am a 77 yo female. When I was first affected by this, I had many falls. Luckily, I had no serious injuries from the falls, but then it went into the body sway. When I stand, and sometimes when I am sitting, I feel as though I am standing in a boat on water and, of course, my balance and walking are severely affected. I also have a "tilted vision" disturbance, which I don't remember the diagnosis for, that plays into the balance and walking. As I understand it, in layman terms, it is a problem with the brain communicating with the nervous system. I also have developed movement [like a kind of twitching] in one leg, foot and toes. That has never been researched. The neurologist just said that it could indicate another kind of involvement. I am supposed to get a certain kind of physical therapy for my FND, but circumstances have prevented me from initiating the PT yet. I am very bothered by the FND diagnosis because of the implication of psychosomatic involvement. I was told too many times by doctors and nurses that this involuntary movement was "all in my head" and obviously that has stayed in my mind, so the psychosomatic involvement of the FND makes me feel again that I am being told that it is all in my head, like I am causing this problem in some way. I have had Covid three times since the end of Jan 2023 and each time has been lengthy, leaving me sick for the better part of 2023, and I feel that it has taken a toll on the body movement. My balance and walking have been greatly affected. I would love to have someone to communicate with on this. I feel alone in this world with my disability and would love to know someone who is experiencing FND and know how it affects them. I will post my comment with the initial "P". Thanks for listening.
I have been diagnosed with FND. I am afffected by a involultary body sway which has forced me to use a cane and walker. I am a 77 yo female. When I was first affected by this, I had many falls. Luckily, I had no serious injuries from the falls, but then it went into the body sway. When I stand, and sometimes when I am sitting, I feel as though I am in a boat on water, swaying back and forth, and, of course, my balance and walking are severely affected. I also have a "tilted vision" disturbance, which I don't remember the diagnosis for, that plays into the balance and walking. As I understand it, in layman terms, it is a problem with the brain communicating with the nervous system. I also have developed movement [like a kind of twitching] in one leg, foot and toes. That has never been researched. The neurologist just said that it could indicate another kind of involvement. I am supposed to get a certain kind of physical therapy for my FND, but circumstances have prevented me from initiating the PT yet. I am bothered by the FND diagnosis because of the implication of psychosomatic involvement. I was told too many times by doctors and nurses that this involuntary movement was "all in my head" and obviously that has stayed in my mind, so the psychosomatic involvement of the FND makes me feel again that I am being told that it is all in my head, like I am causing this problem in some way. I have had Covid three times since the end of Jan 2023 and each time has been lengthy, leaving me sick for the better part of 2023, and it has taken a toll on the body movement. My balance and walking have been greatly affected. I would love to have someone to communicate with on this. I feel alone in this world with my disability and would love to know someone who is experiencing FND and know how it affects them. I will post my comment with the initial "P". Thanks for listening.
Despite a history of multiple head and neck injuries along with over five episodes of loss of consciousness, I too was told I had a functional neurological disorder. With recent cervical fusion and traumatic brain injury determination I am still plagued by a host of reported “functional” symptoms. Two and three years since the last two accidents I have progressed to significant autonomic symptoms as well. Finally getting appointment with autonomic specialist (2 1/2 years since first requested-dismissed by neurologist because he was convinced I had a FND.
From now on, functional means “I just don’t know-you have medically unexplained symptoms”.
My community neurologist (in his early 70s I believe) identified all of my problems before he looked at the MRI. When he saw the images, he said we were going to have a hard time making the argument for surgery. Wise doctor who listened and trusted his experience to make diagnoses. And NO mention of FND.
My solution is to press ahead, keep my cool, be patient and seek other specialists.
Keep advocating and ask for a second opinion. I was told my symptoms were FND. After a year of CBT with no change except getting worse my neurologist decided to refer me to her colleague who was a neuromuscular neurologist. Two visits later I was diagnosed with an extremely rare progressive neuromuscular disease called Stiff Persons Syndrome! Without that diagnosis and getting treatment which are plasma infusion every 3 weeks, muscle relaxers, and diazepam I could've gotten even worse. I've now started having seizures too, which were dismissed as FND again even after telling the ER doctor what I had. Luckily my neurologist is getting my into an epilepsy clinic for evaluation. Some doctors don't like to be wrong or admit they can't figure you out. Even though my diagnosis is pretty dire for my future cause there's no cure and it's progressive, just finally knowing what it is was such a relief! That and knowing I'm finally getting treatment to help my symptoms. Hang in there, and keep asking for another opinion. It took me 5 years and 4 Neurologists before getting my diagnosis. Best of luck, don't give up! 💪
Hello,
I have a question about the physical therapy you are doing Purpleturtle. Is it FMD specific? I recently continued my physical therapy that I've been doing for a year since my spinal fusion. It actually triggers more movement with my FMD. I go in there calm and relaxed and leave with full body movements. Does anyone have any ideas or suggestions?
Wishing you all the best,
Kat
The PT that my movement specialist neurologist recommended, which I have been unable to start yet, due to other health problems, is rendered by a PT Specialist, with specific PT geared to FND/FMD, as I understand it. So, yes, there are PT specialists for this therapy but, as I understand it, they are not easy to find. I sincerely hope you can find one who is able to give you the specific therapy for FND/FMD. Otherwise, if it were me, I do not know if I would pursue it myself. I have just wasted so much time going down dead-end streets with so many health issues, that I just can't do that anymore. I am sincerely not telling you what to do, I am only stating how I feel about it. Whatever you do, I just hope you can find some relief. If you end up worse after your PT, then I would certainly say that you are not getting the correct PT.
P
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!
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Yes, I have been diagnosed with FND. I am afffected by a involultary body sway which has forced me to use a cane and walker. I am a 77 yo female. When I was first affected by this, I had many falls. Luckily, I had no serious injuries from the falls, but then it went into the body sway. When I stand, and sometimes when I am sitting, I feel as though I am standing in a boat on water and, of course, my balance and walking are severely affected. I also have a "tilted vision" disturbance, which I don't remember the diagnosis for, that plays into the balance and walking. As I understand it, in layman terms, it is a problem with the brain communicating with the nervous system. I also have developed movement [like a kind of twitching] in one leg, foot and toes. That has never been researched. The neurologist just said that it could indicate another kind of involvement. I am supposed to get a certain kind of physical therapy for my FND, but circumstances have prevented me from initiating the PT yet. I am very bothered by the FND diagnosis because of the implication of psychosomatic involvement. I was told too many times by doctors and nurses that this involuntary movement was "all in my head" and obviously that has stayed in my mind, so the psychosomatic involvement of the FND makes me feel again that I am being told that it is all in my head, like I am causing this problem in some way. I have had Covid three times since the end of Jan 2023 and each time has been lengthy, leaving me sick for the better part of 2023, and I feel that it has taken a toll on the body movement. My balance and walking have been greatly affected. I would love to have someone to communicate with on this. I feel alone in this world with my disability and would love to know someone who is experiencing FND and know how it affects them. I will post my comment with the initial "P". Thanks for listening.
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1 ReactionI have been diagnosed with FND. I am afffected by a involultary body sway which has forced me to use a cane and walker. I am a 77 yo female. When I was first affected by this, I had many falls. Luckily, I had no serious injuries from the falls, but then it went into the body sway. When I stand, and sometimes when I am sitting, I feel as though I am in a boat on water, swaying back and forth, and, of course, my balance and walking are severely affected. I also have a "tilted vision" disturbance, which I don't remember the diagnosis for, that plays into the balance and walking. As I understand it, in layman terms, it is a problem with the brain communicating with the nervous system. I also have developed movement [like a kind of twitching] in one leg, foot and toes. That has never been researched. The neurologist just said that it could indicate another kind of involvement. I am supposed to get a certain kind of physical therapy for my FND, but circumstances have prevented me from initiating the PT yet. I am bothered by the FND diagnosis because of the implication of psychosomatic involvement. I was told too many times by doctors and nurses that this involuntary movement was "all in my head" and obviously that has stayed in my mind, so the psychosomatic involvement of the FND makes me feel again that I am being told that it is all in my head, like I am causing this problem in some way. I have had Covid three times since the end of Jan 2023 and each time has been lengthy, leaving me sick for the better part of 2023, and it has taken a toll on the body movement. My balance and walking have been greatly affected. I would love to have someone to communicate with on this. I feel alone in this world with my disability and would love to know someone who is experiencing FND and know how it affects them. I will post my comment with the initial "P". Thanks for listening.
In reading the posts, what is "FMD"?
P.
Despite a history of multiple head and neck injuries along with over five episodes of loss of consciousness, I too was told I had a functional neurological disorder. With recent cervical fusion and traumatic brain injury determination I am still plagued by a host of reported “functional” symptoms. Two and three years since the last two accidents I have progressed to significant autonomic symptoms as well. Finally getting appointment with autonomic specialist (2 1/2 years since first requested-dismissed by neurologist because he was convinced I had a FND.
From now on, functional means “I just don’t know-you have medically unexplained symptoms”.
My community neurologist (in his early 70s I believe) identified all of my problems before he looked at the MRI. When he saw the images, he said we were going to have a hard time making the argument for surgery. Wise doctor who listened and trusted his experience to make diagnoses. And NO mention of FND.
My solution is to press ahead, keep my cool, be patient and seek other specialists.
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3 ReactionsI assume Functional Neurological Disorder
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1 ReactionThere were a couple of posts where they referred to both "FND" and "FMD"?
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Keep advocating and ask for a second opinion. I was told my symptoms were FND. After a year of CBT with no change except getting worse my neurologist decided to refer me to her colleague who was a neuromuscular neurologist. Two visits later I was diagnosed with an extremely rare progressive neuromuscular disease called Stiff Persons Syndrome! Without that diagnosis and getting treatment which are plasma infusion every 3 weeks, muscle relaxers, and diazepam I could've gotten even worse. I've now started having seizures too, which were dismissed as FND again even after telling the ER doctor what I had. Luckily my neurologist is getting my into an epilepsy clinic for evaluation. Some doctors don't like to be wrong or admit they can't figure you out. Even though my diagnosis is pretty dire for my future cause there's no cure and it's progressive, just finally knowing what it is was such a relief! That and knowing I'm finally getting treatment to help my symptoms. Hang in there, and keep asking for another opinion. It took me 5 years and 4 Neurologists before getting my diagnosis. Best of luck, don't give up! 💪
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5 ReactionsThe PT that my movement specialist neurologist recommended, which I have been unable to start yet, due to other health problems, is rendered by a PT Specialist, with specific PT geared to FND/FMD, as I understand it. So, yes, there are PT specialists for this therapy but, as I understand it, they are not easy to find. I sincerely hope you can find one who is able to give you the specific therapy for FND/FMD. Otherwise, if it were me, I do not know if I would pursue it myself. I have just wasted so much time going down dead-end streets with so many health issues, that I just can't do that anymore. I am sincerely not telling you what to do, I am only stating how I feel about it. Whatever you do, I just hope you can find some relief. If you end up worse after your PT, then I would certainly say that you are not getting the correct PT.
P
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1 ReactionMay 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
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3 ReactionsI have been recently diagnosed with FND .. nd I'd love to chat about my medical team
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