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?
What I have asked of my Mayo Neuro is a referral to another neuro to follow existing conditions that have been left "unfollowed" after seeing my outside movement disorder specialist, who referred me to this Mayo Neuro. I have brain aneurysms which are supposed to be followed annually with a Brain MRI, I have white matter disease, and many other neuro conditions. I explained this to him when I asked for the referral. This Mayo Neuro hasn't even officially recognized the FND.......he keeps referring to "my dizziness", which is not the case! My outside neuro is the one who gave me the FND Dx. I also asked him for an order for an updated neuro psych exam for my MCI, for a Mayo Program, called Habit, I believe. It has been over a month and he continues to ignore me. I tried to get an appt with a specialist for my Peripheal Neuropathy, and went thru a GI Mayo Dr instead, but he also tells me I must go through this Mayo Neuro, which is ridiculous. Whey do schedulers keep referring to "self-referral", when there is really no such thing, according to what I have encountered? I am so fed up that I am, once again, wondering why I keep thinking Mayo could help me with my medical problems, when all I do is come up against walls? I am considering just giving up, which is what I think the Mayo Neuro wants me to do, and even canceling my upcoming GI appt. I am just beat down and tired, and completely discouraged and frustrated with trying to "advocate" for myself!
P
What I have asked of my Mayo Neuro is a referral to another neuro to follow existing conditions that have been left "unfollowed" after seeing my outside movement disorder specialist, who referred me to this Mayo Neuro. I have brain aneurysms which are supposed to be followed annually with a Brain MRI, I have white matter disease, and many other neuro conditions. I explained this to him when I asked for the referral. This Mayo Neuro hasn't even officially recognized the FND.......he keeps referring to "my dizziness", which is not the case! My outside neuro is the one who gave me the FND Dx. I also asked him for an order for an updated neuro psych exam for my MCI, for a Mayo Program, called Habit, I believe. It has been over a month and he continues to ignore me. I tried to get an appt with a specialist for my Peripheal Neuropathy, and went thru a GI Mayo Dr instead, but he also tells me I must go through this Mayo Neuro, which is ridiculous. Whey do schedulers keep referring to "self-referral", when there is really no such thing, according to what I have encountered? I am so fed up that I am, once again, wondering why I keep thinking Mayo could help me with my medical problems, when all I do is come up against walls? I am considering just giving up, which is what I think the Mayo Neuro wants me to do, and even canceling my upcoming GI appt. I am just beat down and tired, and completely discouraged and frustrated with trying to "advocate" for myself!
P
I emailed this office with my experience and I have never heard anything back from them. I am beginning to think I will never get anywhere on this, and it is just a protection for the Dr, not an office giving help to the patient.
P
What I have asked of my Mayo Neuro is a referral to another neuro to follow existing conditions that have been left "unfollowed" after seeing my outside movement disorder specialist, who referred me to this Mayo Neuro. I have brain aneurysms which are supposed to be followed annually with a Brain MRI, I have white matter disease, and many other neuro conditions. I explained this to him when I asked for the referral. This Mayo Neuro hasn't even officially recognized the FND.......he keeps referring to "my dizziness", which is not the case! My outside neuro is the one who gave me the FND Dx. I also asked him for an order for an updated neuro psych exam for my MCI, for a Mayo Program, called Habit, I believe. It has been over a month and he continues to ignore me. I tried to get an appt with a specialist for my Peripheal Neuropathy, and went thru a GI Mayo Dr instead, but he also tells me I must go through this Mayo Neuro, which is ridiculous. Whey do schedulers keep referring to "self-referral", when there is really no such thing, according to what I have encountered? I am so fed up that I am, once again, wondering why I keep thinking Mayo could help me with my medical problems, when all I do is come up against walls? I am considering just giving up, which is what I think the Mayo Neuro wants me to do, and even canceling my upcoming GI appt. I am just beat down and tired, and completely discouraged and frustrated with trying to "advocate" for myself!
P
I am sorry to hear your frustrations. I am also dealing with dizziness here in Ohio for more than a year, after all the tests they still have not figured out the cause, I was thinking Mayo but after hearing your experience, I will deal with Dr's locally. If you have miner problems I guess it is hard for them to figure out. Hope you find an answer.
I too have been diagnosed in August of 2022. I am still struggling with understanding it 100%. I have seen multiple Dr's, neurologist, psychologist, and a neuropshycolgist. I am doing CBT currently buy have not had any changes in seizures or balance. Severe headaches and extreme fatigue. Electric shoke feeling along with ice water sensations in legs and arms and the back of my head. I am making an appointment with the Mayo Clinic to possibly get a plan to help lessen this.
You might want to check out Familial Hemiplegic Migraine or Sporadic Hemiplegic Migraine Episodes. The term "Migraine" gets waaay too much significance in the diagnosis ( in my opinion) as it is the seizures, paralysis, fatigue etc followed by a humdinger of a migraine that is the whole of the issue. I got a diagnosis of FND from an idiot neuro before doing my own research and genetic testing to prove the Hemiplegia - which has known treatments that work (intermittently ).
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
I am not sure about Mayo but I know Cleveland clinic has a specialty department for FMD. I was told this was one of my diagnoses after a hospital stay and four outpatient neurologists. I contacted Cleveland and they set me up for an out of state visit with four specialists who worked together on my treatment plan. They have saved my life.
Best of luck to you.
Kat
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.
I am so happy to hear that you found a good program. I was treated like an insane person by the hospital and a few neurologists until I found the right team. It is so important that FND is recognized everywhere so we can all get the proper treatment.
Best of luck to everyone.
Kat
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
My son, a former patient of the Mayo Clinic, tried to get an appointment at the Mayo Clinic through the Neurology Department, the Internal Medicine Department and a 3rd Department that slips my mind at this point, We suspect he has FND and has been struggling with it since 2019 after graduating with his PhD from NYU. He was diagnosed with FND initially by a neurologist specializing in muscle disorders because he now cannot walk. We wanted to get a confirmatory diagnosis at Mayo, because of his respect for the Clinic, but our 3 tries to get him in were unsuccessful. At the recommendation of a Neurologist specializing in sleep disorders and non-epileptic seizures we took him to Robert Woods Johnson's med school neurology department. They concurred but could not identify anyone in the New Jersey-New York area that specializes in FND and could help us. As he continues to go down his rabbit hole we are desperate to find someone that can help us.
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What I have asked of my Mayo Neuro is a referral to another neuro to follow existing conditions that have been left "unfollowed" after seeing my outside movement disorder specialist, who referred me to this Mayo Neuro. I have brain aneurysms which are supposed to be followed annually with a Brain MRI, I have white matter disease, and many other neuro conditions. I explained this to him when I asked for the referral. This Mayo Neuro hasn't even officially recognized the FND.......he keeps referring to "my dizziness", which is not the case! My outside neuro is the one who gave me the FND Dx. I also asked him for an order for an updated neuro psych exam for my MCI, for a Mayo Program, called Habit, I believe. It has been over a month and he continues to ignore me. I tried to get an appt with a specialist for my Peripheal Neuropathy, and went thru a GI Mayo Dr instead, but he also tells me I must go through this Mayo Neuro, which is ridiculous. Whey do schedulers keep referring to "self-referral", when there is really no such thing, according to what I have encountered? I am so fed up that I am, once again, wondering why I keep thinking Mayo could help me with my medical problems, when all I do is come up against walls? I am considering just giving up, which is what I think the Mayo Neuro wants me to do, and even canceling my upcoming GI appt. I am just beat down and tired, and completely discouraged and frustrated with trying to "advocate" for myself!
P
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2 Reactions@pkh3381 I can imagine you are feeling exhausted. You may consider contacting Patient Experience:
Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Staff are available to discuss comments or concerns you may have regarding your medical care or privacy at Mayo Clinic.
When is your GI appointment?
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1 ReactionI emailed this office with my experience and I have never heard anything back from them. I am beginning to think I will never get anywhere on this, and it is just a protection for the Dr, not an office giving help to the patient.
P
I am sorry to hear your frustrations. I am also dealing with dizziness here in Ohio for more than a year, after all the tests they still have not figured out the cause, I was thinking Mayo but after hearing your experience, I will deal with Dr's locally. If you have miner problems I guess it is hard for them to figure out. Hope you find an answer.
You might want to check out Familial Hemiplegic Migraine or Sporadic Hemiplegic Migraine Episodes. The term "Migraine" gets waaay too much significance in the diagnosis ( in my opinion) as it is the seizures, paralysis, fatigue etc followed by a humdinger of a migraine that is the whole of the issue. I got a diagnosis of FND from an idiot neuro before doing my own research and genetic testing to prove the Hemiplegia - which has known treatments that work (intermittently ).
I am not sure about Mayo but I know Cleveland clinic has a specialty department for FMD. I was told this was one of my diagnoses after a hospital stay and four outpatient neurologists. I contacted Cleveland and they set me up for an out of state visit with four specialists who worked together on my treatment plan. They have saved my life.
Best of luck to you.
Kat
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1 ReactionI am so happy to hear that you found a good program. I was treated like an insane person by the hospital and a few neurologists until I found the right team. It is so important that FND is recognized everywhere so we can all get the proper treatment.
Best of luck to everyone.
Kat
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1 ReactionI have been told that FND can also be caused by physical stress such as surgery, injury, pain, migraine, etc. This is the case for my symptoms.
Kat
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1 ReactionKat, thank you for both your replies! I am going to think about the Cleveland Clinic. ❤️
P
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1 ReactionMy son, a former patient of the Mayo Clinic, tried to get an appointment at the Mayo Clinic through the Neurology Department, the Internal Medicine Department and a 3rd Department that slips my mind at this point, We suspect he has FND and has been struggling with it since 2019 after graduating with his PhD from NYU. He was diagnosed with FND initially by a neurologist specializing in muscle disorders because he now cannot walk. We wanted to get a confirmatory diagnosis at Mayo, because of his respect for the Clinic, but our 3 tries to get him in were unsuccessful. At the recommendation of a Neurologist specializing in sleep disorders and non-epileptic seizures we took him to Robert Woods Johnson's med school neurology department. They concurred but could not identify anyone in the New Jersey-New York area that specializes in FND and could help us. As he continues to go down his rabbit hole we are desperate to find someone that can help us.
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