I am new here and decided to browse I do not see a support group for FND, I was diagnosed yesterday, and just looking for support. This is not easy! Just wondering if anyone else is going through the samething?
Hello @bhill92 and welcome to Mayo Clinic Connect. I was actually able to find a discussion that has some new members looking to connect with others on FDN, so you will notice that I have moved your post here:
- Functional Neurological Disorder (FND)/Conversion Disorder: https://connect.mayoclinic.org/discussion/functional-neurological-disorder/
I'd like to bring in @purpleturtle and also see that @tywebb has joined you as well! What are your biggest questions/concerns that members can start with?
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.
Hello @tywebb and welcome to Mayo Clinic Connect. It is always a great idea to reach out for support when you are feeling like you're struggling. You mentioned seeking an appointment with Mayo Clinic. If you are in need, you can use this link: http://mayocl.in/1mtmR63
Hello @bhill92 and welcome to Mayo Clinic Connect. I was actually able to find a discussion that has some new members looking to connect with others on FDN, so you will notice that I have moved your post here:
- Functional Neurological Disorder (FND)/Conversion Disorder: https://connect.mayoclinic.org/discussion/functional-neurological-disorder/
I'd like to bring in @purpleturtle and also see that @tywebb has joined you as well! What are your biggest questions/concerns that members can start with?
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/.
This is excellent updated information. I was told that my FMD is caused by pain from fibromyalgia and migraines. But I went to many doctors and hospitals that actually told me I was a medical mystery and the .0001 percent.
Best of luck to you all,
Kat
This is excellent updated information. I was told that my FMD is caused by pain from fibromyalgia and migraines. But I went to many doctors and hospitals that actually told me I was a medical mystery and the .0001 percent.
Best of luck to you all,
Kat
That is exactly what I was told by my motion specialist. So far I have tried 2 drugs. Propanadol which I had an allergic reaction to and Primidone which caused severe stomach problems. I am now scheduled for botox injections in May.
That is exactly what I was told by my motion specialist. So far I have tried 2 drugs. Propanadol which I had an allergic reaction to and Primidone which caused severe stomach problems. I am now scheduled for botox injections in May.
The movement specialist is the only one who recognized my symptoms as being physical and not in my mind. He did not prescribe any medications for the movement. I will inquire about that. The migraine medication actually helps the movement tremendously. When my migraines are terrible my movement correlates with it. I also had a cervical fusion with hardware and I believe that the pain and physical trauma from that has contributed to the FMD as well.
Let us know how the Botox injections affect you and if they help the movement.
Best of luck to you all,
Kat
Hello @purpleturtle. It is great you are going to physical and occupational therapy as two options in addition to other medicinal therapies your doctor has recommended.
I did this to better help you connect to past comments as well as members such as @patheflin@bhavit@nrd1 and @jenniferhunter who have all been in the discussion previously.
How long will you give the therapy a go before you will know if it is working for you?
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 there @bhill92 - It's been a few months since you've last posted. How are things going? Being alone at Mayo must not have been easy. I relate - I was alone attending Mayo's 3 week pain rehab program in FL.
Have you gotten answers to your questions about FND? How have you been handling your challenges since diagnosis?
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.
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Hello @bhill92 and welcome to Mayo Clinic Connect. I was actually able to find a discussion that has some new members looking to connect with others on FDN, so you will notice that I have moved your post here:
- Functional Neurological Disorder (FND)/Conversion Disorder: https://connect.mayoclinic.org/discussion/functional-neurological-disorder/
I'd like to bring in @purpleturtle and also see that @tywebb has joined you as well! What are your biggest questions/concerns that members can start with?
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1 ReactionHello @tywebb and welcome to Mayo Clinic Connect. It is always a great idea to reach out for support when you are feeling like you're struggling. You mentioned seeking an appointment with Mayo Clinic. If you are in need, you can use this link: http://mayocl.in/1mtmR63
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1 ReactionThank you! It has been a rough week, hardest thing is being at Mayo by myself and not having anyone. I've so many questions about this.
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1 ReactionThis is excellent updated information. I was told that my FMD is caused by pain from fibromyalgia and migraines. But I went to many doctors and hospitals that actually told me I was a medical mystery and the .0001 percent.
Best of luck to you all,
Kat
Did you get an answers at Mayo? I’m searching for more information and it is so limited in most places.
Best of luck,
Kat
That is exactly what I was told by my motion specialist. So far I have tried 2 drugs. Propanadol which I had an allergic reaction to and Primidone which caused severe stomach problems. I am now scheduled for botox injections in May.
The movement specialist is the only one who recognized my symptoms as being physical and not in my mind. He did not prescribe any medications for the movement. I will inquire about that. The migraine medication actually helps the movement tremendously. When my migraines are terrible my movement correlates with it. I also had a cervical fusion with hardware and I believe that the pain and physical trauma from that has contributed to the FMD as well.
Let us know how the Botox injections affect you and if they help the movement.
Best of luck to you all,
Kat
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 there @bhill92 - It's been a few months since you've last posted. How are things going? Being alone at Mayo must not have been easy. I relate - I was alone attending Mayo's 3 week pain rehab program in FL.
Have you gotten answers to your questions about FND? How have you been handling your challenges since diagnosis?
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.
-
Like -
Helpful -
Hug
1 Reaction