Is there anyone who has been diagnosed with FND, but also has significant White Matter Disease, Cerebral Small Vessel Disease, and/or MCI? I have found several articles that state that these diagnoses can have an impact on balance and walking. I am still researching this, but I would really appreciate hearing from someone with more knowledge in this area. Also, one of my MRA reports indicated my White Matter Disease is in the 75th percentile and I am wondering if that it considered high? I also have been diagnosed with "Tilted Vision" and keep trying to get Drs to listen to me, that certainly this must affect my balance and walking? Any help would be appreciated.
P
I am sorry about your meningioma. Do they think it may be causing the vertigo?
I don't have vertigo or dizziness. My body actually moves [a body sway] involuntarily.
Best of luck with your vertigo/balance. Vertigo can be one of the hardest things to diagnose.
P
I went for the balance test today and after she explained what was going to happen, I said no way. I have vertigo and have to sleep on two high pillows to keep my head up. She was going to have me lay flat. I had a terrible event that happened to me during a vestibular exercise. She shook my head after she had me lay on my side to get crystals in ear back in place. Next day in am threw up for 2 days, fell to floor and ended up getting tinnitus. Thus lady was going to move my head in different directions. No way, I was going to let her move my head after what happened in therapy. I left. My ENT doctor understood. I don’t think anyone with a brain tumor should try to do things that aggravate your brain.
I have been diagnosed with a Functional Neurologic Disorder, also called Functional Movement (Psychogenic) Disorder caused by taking a single dose of Sertraline (Zoloft). I had extreme anxiety and panic attacks, with uncontrolled leg, arm and body movements, stuttering and an extreme startle response. Unfortunately, I was advised that the facility where I was diagnosed, UofL Physicians Neurology in Louisville KY, no longer has a program to treat the problem. I was prescribed 300mg of Gabapentin 3 times a day (which has helped with the symptoms) and advised to contact either Vanderbilt in Tennessee, a 3 hour drive from where I live, or The Mayo Clinic an 11 hour drive from where I live. Both of these Medical facilities require in person initial visits, which is understandable. The problem is that ongoing treatment would need to be via Video. Vanderbilt will only provide video visits to residents of Tennessee and The Mayo Clinic will only allow video visits if the treating physician is registered to practice in your own state, which in my case is Indiana. So herein lies the problem for so many patients who need treatment for a condition which is not available in their own State. What do we do and where can we go for treatment?
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/.
I was diagnosed with FMD - FND at University of Louisville Physicians - Neurology (KY) Unfortunately they no longer provide treatment for this condition other than prescribing 300mg Gabapentin three times a day and suggesting I contact The Mayo Clinic or Vanderbilt.
Thanks for pointing out the affiliated hospitals of the Mayo Clinic Care Network, @jakedduck1.
@wilmslow, the Mayo Clinic Care Network is a select group of independent health care providers, carefully vetted by Mayo Clinic. Their clinicians are granted special access to Mayo's clinical, educational, research and operational knowledge, expertise and resources. And most important, it provides patients the care they need, closer to home.
Mayo Clinic itself has several locations, including Rochester, MN, Jacksonville, FL and Phoenix, AZ. If you would like to see Mayo Clinic experts, you can request an appointment here: http://mayocl.in/1mtmR63
I was diagnosed in October after two years of visiting Mayo Clinic. They do have a very good program called the.BeST program and I am blessed to have been admitted to that program and start the five day Boot Camp on May 12. And we’re also fortunate to only live about five hours from the Mayo Clinic. It still is a long drive and we have to stay overnight one to three nights depending on the appointments. But I’m so thankful to be close enough to receive their care. I will keep you posted on how the treatment program goes next week. As I said, it’s a Boot Camp type program one week of very intensive therapies, mostly PT and OT. 🙏🙏
A lot of other countries consider my diagnosis a ‘functional’ disorder when it is a serious, neurological disorder that should be treated as so. It is sad when this diagnosis is thrown around bc they can’t find the correct answer the first time. Thankfully I do have the proper diagnosis and I have good doctors and will hopefully be seeing an M.E. (myalgic encephalomyelitis) specialist next year. I’ve heard we are about 2 years from treatment being released for this diagnosis and there is a ton of research.
My advice for those who get this FND thrown around: seek help elsewhere and continue to advocate for yourself.
I thankfully have not had this diagnosis, but it was mentioned in the neuro MD’s notes from Mayo before they found my diagnosis and it pissed me off when I found out what it meant. I’m not crazy and I have many physiological problems that need to be addressed and thankful that I have good doctors here in town to help me as best they can. The main MD at Mayo I saw was excellent and after her and the specialists talked determined my diagnosis based on my test results.
Keep fighting to find the right answer. Nothing worse than the unknown or MDs that don’t believe you! Good luck
Exactly. It used to be called conversion disorder which meant it could be just psychosomatic but now a days it means there are physical symptoms but they could be manifesting by stress or some other reason that hasn’t been found yet. So at least they’re not outright calling someone crazy, making it up or a hypochondriac. I’ve had seizures since childhood and was in meds for years. I got a new young dr and he changed the diagnosis to this. I got another opinion of a doctor with a lifetime of experience and he diagnosed me with seizures as have all of my other neurologists I’ve ever had. So I’d say find a new doctor
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My ENT doctor just a Balance test at the hospital for me. I started having episodes ov vertigo. This will help with a baseline. I have a meningioma.
I am sorry about your meningioma. Do they think it may be causing the vertigo?
I don't have vertigo or dizziness. My body actually moves [a body sway] involuntarily.
Best of luck with your vertigo/balance. Vertigo can be one of the hardest things to diagnose.
P
I went for the balance test today and after she explained what was going to happen, I said no way. I have vertigo and have to sleep on two high pillows to keep my head up. She was going to have me lay flat. I had a terrible event that happened to me during a vestibular exercise. She shook my head after she had me lay on my side to get crystals in ear back in place. Next day in am threw up for 2 days, fell to floor and ended up getting tinnitus. Thus lady was going to move my head in different directions. No way, I was going to let her move my head after what happened in therapy. I left. My ENT doctor understood. I don’t think anyone with a brain tumor should try to do things that aggravate your brain.
I have been diagnosed with a Functional Neurologic Disorder, also called Functional Movement (Psychogenic) Disorder caused by taking a single dose of Sertraline (Zoloft). I had extreme anxiety and panic attacks, with uncontrolled leg, arm and body movements, stuttering and an extreme startle response. Unfortunately, I was advised that the facility where I was diagnosed, UofL Physicians Neurology in Louisville KY, no longer has a program to treat the problem. I was prescribed 300mg of Gabapentin 3 times a day (which has helped with the symptoms) and advised to contact either Vanderbilt in Tennessee, a 3 hour drive from where I live, or The Mayo Clinic an 11 hour drive from where I live. Both of these Medical facilities require in person initial visits, which is understandable. The problem is that ongoing treatment would need to be via Video. Vanderbilt will only provide video visits to residents of Tennessee and The Mayo Clinic will only allow video visits if the treating physician is registered to practice in your own state, which in my case is Indiana. So herein lies the problem for so many patients who need treatment for a condition which is not available in their own State. What do we do and where can we go for treatment?
@wilmslow
Sorry to hear you're having psychogenic seizures..
Are you seeing counselor?
Here are some members of the Mayo Clinic network in Indiana.
Beacon Health System
Hancock Health
Hendricks Regional Health
Johnson Memorial Health.
All the best,
Jake
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3 ReactionsI was diagnosed with FMD - FND at University of Louisville Physicians - Neurology (KY) Unfortunately they no longer provide treatment for this condition other than prescribing 300mg Gabapentin three times a day and suggesting I contact The Mayo Clinic or Vanderbilt.
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1 ReactionThank you for the information. I was not aware that the Mayo Clinic had any associated locations in Indiana.
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1 ReactionThanks for pointing out the affiliated hospitals of the Mayo Clinic Care Network, @jakedduck1.
@wilmslow, the Mayo Clinic Care Network is a select group of independent health care providers, carefully vetted by Mayo Clinic. Their clinicians are granted special access to Mayo's clinical, educational, research and operational knowledge, expertise and resources. And most important, it provides patients the care they need, closer to home.
Here's more information https://www.mayoclinic.org/about-mayo-clinic/care-network/more-care-close-to-home
Mayo Clinic itself has several locations, including Rochester, MN, Jacksonville, FL and Phoenix, AZ. If you would like to see Mayo Clinic experts, you can request an appointment here: http://mayocl.in/1mtmR63
-
Like -
Helpful -
Hug
1 ReactionI was diagnosed in October after two years of visiting Mayo Clinic. They do have a very good program called the.BeST program and I am blessed to have been admitted to that program and start the five day Boot Camp on May 12. And we’re also fortunate to only live about five hours from the Mayo Clinic. It still is a long drive and we have to stay overnight one to three nights depending on the appointments. But I’m so thankful to be close enough to receive their care. I will keep you posted on how the treatment program goes next week. As I said, it’s a Boot Camp type program one week of very intensive therapies, mostly PT and OT. 🙏🙏
Exactly. It used to be called conversion disorder which meant it could be just psychosomatic but now a days it means there are physical symptoms but they could be manifesting by stress or some other reason that hasn’t been found yet. So at least they’re not outright calling someone crazy, making it up or a hypochondriac. I’ve had seizures since childhood and was in meds for years. I got a new young dr and he changed the diagnosis to this. I got another opinion of a doctor with a lifetime of experience and he diagnosed me with seizures as have all of my other neurologists I’ve ever had. So I’d say find a new doctor