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
Hi.
I have been working with my local medical team to make progress in the best diagnosis, and pursuing steps to manage and hopefully recover from the imbalance.
The Functional Neurological Disorder (FND) diagnosis was made by my Physical Therapy specialty team in a Physical Therapy and Rehabilitation clinic by two specialists; both have PT / DPT degrees and actively work with patients who are unstable on their feet.
I do not have any physical limitations to perform the PT exercises and associated Brain Habituation components for which I am very grateful.
Hi @amber3212 and @uldiver. I was diagnosed with functional movement disorder (FMD) which is a subset of FND after living with symptoms for many years. This is a tough diagnosis to wrap ones head around. FND and FMD are no longer considered to be "all in your head" (unless you consider that the brain is in your head!). Rather FND is due to a problem with the functioning of the nervous system, and based on recent research it is now thought by many neurologists to be the result of the brain’s inability to send and receive signals properly, rather than disease. Trauma is sometimes a trigger, but not always. Stress does seem to make symptoms worse...so that's the psychogenic part. But as my neurologist explained "the brain has hardware and software...your brain's hardware is fine but the software is not." I was thrilled when he told me there is treatment to 'retrain the brain'.
I'm not sure where you live but Stanford (California), Cleveland Clinic (Ohio), University of Louisville/Frazier Rehabilitation Hospital (KY), Mayo Clinic (Minnesota, Florida and Arizona), and The Recovery Project (Michigan) all have specialty clinics with special FMD programs. Other places like Mass Medical in Boston treat FMD and FND as well, and there are FND research studies being done there.
After I was diagnosed I found my way to 2 very good websites and a Facebook support group - all of which greatly helped me understand and eventually accept that the diagnosis is real for me. I highly recommend looking at the information at these website links if f you haven't already found you way to there: https://fndhope.org/ and https://www.neurosymptoms.org/.
Hi @jubilee I am responding to a post dated Feb 26, 2019, you made on Mayo Connect. You drew my attention to Functional Neurological Disorder (FND) as well as its subset FMD. The two websites you referred to seem to understand my condition, the same way as I understand it myself. Namely, "My brain and nervous system *hardware* has no problem, but the *software* is messed up"
I wish to exchange notes with you as well ( with your consent) and be informed of your progress since 2019. Let me briefly share my story. I have elsewhere described my condition (on Mayo Connect) as an internal shock from an invisible defibrillator. I have yet to see a Neurologist, the appointment is in October 2023. This issue resurfaced recently when I started practicing meditation. When I reach a certain state in my meditation, I experience convulsions, and I cannot transcend to a deeper level of meditation because of the "electric shocks" Your post offered me a great lead to probe my condition further.
[Pardon the Caps] THE MOST IMPORTANT FACET OF MY PRESENT STATE IS THAT I CAN BRING ON THE SHOCKS ON COMMAND. AS SUCH IT MIGHT BE CONDUCIVE TO OBSERVATION AND STUDY.
I am interested in your progress and treatment. Since it is only a matter of brain training, I feel quite hopeful for you as well as myself. We live in a time when brain science is on the cutting edge of its development.
Thank you for your attention Jubilee, Hope to hear from you.
Hi @jubilee I am responding to a post dated Feb 26, 2019, you made on Mayo Connect. You drew my attention to Functional Neurological Disorder (FND) as well as its subset FMD. The two websites you referred to seem to understand my condition, the same way as I understand it myself. Namely, "My brain and nervous system *hardware* has no problem, but the *software* is messed up"
I wish to exchange notes with you as well ( with your consent) and be informed of your progress since 2019. Let me briefly share my story. I have elsewhere described my condition (on Mayo Connect) as an internal shock from an invisible defibrillator. I have yet to see a Neurologist, the appointment is in October 2023. This issue resurfaced recently when I started practicing meditation. When I reach a certain state in my meditation, I experience convulsions, and I cannot transcend to a deeper level of meditation because of the "electric shocks" Your post offered me a great lead to probe my condition further.
[Pardon the Caps] THE MOST IMPORTANT FACET OF MY PRESENT STATE IS THAT I CAN BRING ON THE SHOCKS ON COMMAND. AS SUCH IT MIGHT BE CONDUCIVE TO OBSERVATION AND STUDY.
I am interested in your progress and treatment. Since it is only a matter of brain training, I feel quite hopeful for you as well as myself. We live in a time when brain science is on the cutting edge of its development.
Thank you for your attention Jubilee, Hope to hear from you.
That is very interesting Nick. Have you had any non epileptic seizures as well? I was told this past Friday that I need to retrain my body to respond to certain stimuli differently. Yoga, meditation, PT and OT were part of my prescribed treatment plan.
Best of luck to you,
Kat
Hi Kat,
I have not had any seizure episodes. I know a couple of individuals who have had seizure disorders. I know what it is, but I have not had any seizure problems.
I broke my foot in 2014 and had a doctor that was supposed to be a rehab doctor treating me. He was absolutely hopeless. I complained so much they finally brought in the doctor that had treated me in the previous hospital, post surgery. He explained in nice words to this doctor that he was an idiot.
Fast forward 2years and I finally got an appointment with an outpatient neurologist to help me with my incredibly awful migraines, non epileptic seizures and other types of aura (not the normal ones you see with migraine.) I had an MRI which the doctor was supposed t o explain to me. I walked into that appointment and it was the SAME doctor that had treated me in 2014 as a rehab doc. He told me I had FND, it was caused by anxiety, and to see my primary doctor for some antidepressants. I had a friend with me and she loudly said "SHE IS THE LEAST ANXIOUS PERSON I KNOW !!". So I asked what else I could do. He wrote down the website for FND and said to go home and look it up.
So I researched, and researched and researched. I finally went to my primary doctor, who thumped the desk and said "YOU ARE NOT ANXIOUS - THIS IS REAL". I told him I thought I had Familial Hemiplegic Migraines and showed him the PubMed etc articles. He agreed. I got on a genetic trial and they agreed with me. AND they later told me they had found a new gene expression that was causing my problems and the solution was: High doses of UBIQUINOL with KANEKA - I'm on 900 mg a day!!! My CoQ-8 gene was caput and CoQ-10 supplements would mitigate it. They have, it has and I am NEVER going back to that neurologist!!!
Hi Kat,
I have not had any seizure episodes. I know a couple of individuals who have had seizure disorders. I know what it is, but I have not had any seizure problems.
FND can have non epileptic seizures associated with it. FND is an umbrella with functional movement disorder and non epileptic seizures under it. That’s great that you are able to manage your symptoms on your own. I am just learning new techniques as I’ve recently been to the Cleveland clinic and met with their FND team.
Best of luck to you,
Kat
I broke my foot in 2014 and had a doctor that was supposed to be a rehab doctor treating me. He was absolutely hopeless. I complained so much they finally brought in the doctor that had treated me in the previous hospital, post surgery. He explained in nice words to this doctor that he was an idiot.
Fast forward 2years and I finally got an appointment with an outpatient neurologist to help me with my incredibly awful migraines, non epileptic seizures and other types of aura (not the normal ones you see with migraine.) I had an MRI which the doctor was supposed t o explain to me. I walked into that appointment and it was the SAME doctor that had treated me in 2014 as a rehab doc. He told me I had FND, it was caused by anxiety, and to see my primary doctor for some antidepressants. I had a friend with me and she loudly said "SHE IS THE LEAST ANXIOUS PERSON I KNOW !!". So I asked what else I could do. He wrote down the website for FND and said to go home and look it up.
So I researched, and researched and researched. I finally went to my primary doctor, who thumped the desk and said "YOU ARE NOT ANXIOUS - THIS IS REAL". I told him I thought I had Familial Hemiplegic Migraines and showed him the PubMed etc articles. He agreed. I got on a genetic trial and they agreed with me. AND they later told me they had found a new gene expression that was causing my problems and the solution was: High doses of UBIQUINOL with KANEKA - I'm on 900 mg a day!!! My CoQ-8 gene was caput and CoQ-10 supplements would mitigate it. They have, it has and I am NEVER going back to that neurologist!!!
That is great that you are able to treat your migraines and seizures. I have migraine associated vertigo which causes a lot of the strange auras and sensations even without the pain of the headache at times. I also have non epileptic seizures and functional movement disorder. I was told that my physical stress and pain is what has caused the movements and seizures. I was also told that your brain and body reacts to pain and physical stress the same as emotional stressors. It sounds like the doctor may have been following those guidelines. I am not a doctor but these are all things I’ve learned from my care team. It’s wonderful that they found the root cause of your symptoms and you are getting better.
Kat
Hi @jubilee I am responding to a post dated Feb 26, 2019, you made on Mayo Connect. You drew my attention to Functional Neurological Disorder (FND) as well as its subset FMD. The two websites you referred to seem to understand my condition, the same way as I understand it myself. Namely, "My brain and nervous system *hardware* has no problem, but the *software* is messed up"
I wish to exchange notes with you as well ( with your consent) and be informed of your progress since 2019. Let me briefly share my story. I have elsewhere described my condition (on Mayo Connect) as an internal shock from an invisible defibrillator. I have yet to see a Neurologist, the appointment is in October 2023. This issue resurfaced recently when I started practicing meditation. When I reach a certain state in my meditation, I experience convulsions, and I cannot transcend to a deeper level of meditation because of the "electric shocks" Your post offered me a great lead to probe my condition further.
[Pardon the Caps] THE MOST IMPORTANT FACET OF MY PRESENT STATE IS THAT I CAN BRING ON THE SHOCKS ON COMMAND. AS SUCH IT MIGHT BE CONDUCIVE TO OBSERVATION AND STUDY.
I am interested in your progress and treatment. Since it is only a matter of brain training, I feel quite hopeful for you as well as myself. We live in a time when brain science is on the cutting edge of its development.
Thank you for your attention Jubilee, Hope to hear from you.
@nickm@jubilee Mayo Clinic Connect has a page for private messaging (PM). If you look at the right top of your page you will see an envelope icon. Click on the envelope icon and you will be taken to the Private Message page. You can PM each other. When there is a private message for you to read you will notice a number on the envelope showing you how many private messages you have.
I hope this helps both of you if you decide you’d like to support one another with private messages. Could you let me know what you think about using this feature of PM on Mayo Clinic Connect?
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I had occupational therapy for my hands and physical therapy for balance problems. I have started botox injections for the tremors.
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1 ReactionI have not heard of brain habituation. Can you explain further?
Thank you,
Kat
Hi @jubilee I am responding to a post dated Feb 26, 2019, you made on Mayo Connect. You drew my attention to Functional Neurological Disorder (FND) as well as its subset FMD. The two websites you referred to seem to understand my condition, the same way as I understand it myself. Namely, "My brain and nervous system *hardware* has no problem, but the *software* is messed up"
I wish to exchange notes with you as well ( with your consent) and be informed of your progress since 2019. Let me briefly share my story. I have elsewhere described my condition (on Mayo Connect) as an internal shock from an invisible defibrillator. I have yet to see a Neurologist, the appointment is in October 2023. This issue resurfaced recently when I started practicing meditation. When I reach a certain state in my meditation, I experience convulsions, and I cannot transcend to a deeper level of meditation because of the "electric shocks" Your post offered me a great lead to probe my condition further.
[Pardon the Caps] THE MOST IMPORTANT FACET OF MY PRESENT STATE IS THAT I CAN BRING ON THE SHOCKS ON COMMAND. AS SUCH IT MIGHT BE CONDUCIVE TO OBSERVATION AND STUDY.
I am interested in your progress and treatment. Since it is only a matter of brain training, I feel quite hopeful for you as well as myself. We live in a time when brain science is on the cutting edge of its development.
Thank you for your attention Jubilee, Hope to hear from you.
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1 ReactionThat is very interesting Nick. Have you had any non epileptic seizures as well? I was told this past Friday that I need to retrain my body to respond to certain stimuli differently. Yoga, meditation, PT and OT were part of my prescribed treatment plan.
Best of luck to you,
Kat
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1 ReactionHi Kat,
I have not had any seizure episodes. I know a couple of individuals who have had seizure disorders. I know what it is, but I have not had any seizure problems.
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Helpful -
Hug
1 ReactionI broke my foot in 2014 and had a doctor that was supposed to be a rehab doctor treating me. He was absolutely hopeless. I complained so much they finally brought in the doctor that had treated me in the previous hospital, post surgery. He explained in nice words to this doctor that he was an idiot.
Fast forward 2years and I finally got an appointment with an outpatient neurologist to help me with my incredibly awful migraines, non epileptic seizures and other types of aura (not the normal ones you see with migraine.) I had an MRI which the doctor was supposed t o explain to me. I walked into that appointment and it was the SAME doctor that had treated me in 2014 as a rehab doc. He told me I had FND, it was caused by anxiety, and to see my primary doctor for some antidepressants. I had a friend with me and she loudly said "SHE IS THE LEAST ANXIOUS PERSON I KNOW !!". So I asked what else I could do. He wrote down the website for FND and said to go home and look it up.
So I researched, and researched and researched. I finally went to my primary doctor, who thumped the desk and said "YOU ARE NOT ANXIOUS - THIS IS REAL". I told him I thought I had Familial Hemiplegic Migraines and showed him the PubMed etc articles. He agreed. I got on a genetic trial and they agreed with me. AND they later told me they had found a new gene expression that was causing my problems and the solution was: High doses of UBIQUINOL with KANEKA - I'm on 900 mg a day!!! My CoQ-8 gene was caput and CoQ-10 supplements would mitigate it. They have, it has and I am NEVER going back to that neurologist!!!
-
Like -
Helpful -
Hug
1 ReactionHello,
FND can have non epileptic seizures associated with it. FND is an umbrella with functional movement disorder and non epileptic seizures under it. That’s great that you are able to manage your symptoms on your own. I am just learning new techniques as I’ve recently been to the Cleveland clinic and met with their FND team.
Best of luck to you,
Kat
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Helpful -
Hug
4 ReactionsThat is great that you are able to treat your migraines and seizures. I have migraine associated vertigo which causes a lot of the strange auras and sensations even without the pain of the headache at times. I also have non epileptic seizures and functional movement disorder. I was told that my physical stress and pain is what has caused the movements and seizures. I was also told that your brain and body reacts to pain and physical stress the same as emotional stressors. It sounds like the doctor may have been following those guidelines. I am not a doctor but these are all things I’ve learned from my care team. It’s wonderful that they found the root cause of your symptoms and you are getting better.
Kat
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3 Reactions@nickm @jubilee Mayo Clinic Connect has a page for private messaging (PM). If you look at the right top of your page you will see an envelope icon. Click on the envelope icon and you will be taken to the Private Message page. You can PM each other. When there is a private message for you to read you will notice a number on the envelope showing you how many private messages you have.
I hope this helps both of you if you decide you’d like to support one another with private messages. Could you let me know what you think about using this feature of PM on Mayo Clinic Connect?
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2 ReactionsThank you for the info @naturegirl5 this is beneficial info. I may use the PM feature in the future, should the need arise.
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