Here are some steps on finding treatment without the run around. Step one find out what treatment you need done ex. fMRI (Functional Magnetic Resonance Imaging). Second call your insurance and make sure it's covered. Also look up the medical ICD or CPT codes prior to calling the insurance, because they might ask for it. I know because I have had to look them up via Google prior to calling. Third call your doctor and ask them to put in a referral to get you the test and/ or treatment that you need specific to your diagnosis. I am in the process of waiting to talk to my doctor to see if he will move forward and help me get the appropriate treatment. I have requested physiotherapy, CBT (cognitive behavioral therapy), EEG (electroencephalogram), and fMRI (Functional Magnetic Resonance Imaging). I will keep everyone updated and let know how it goes. This is my last hope in the medical world before I go to a natural approach. Wish me good luck.
Finally got some information on the t... - Functional Neurol...
Finally got some information on the treatment for FND
Hi I did the Mulit-disciplinary Therapy Treatments for FND many years ago in a London Hospital and several patients doing the same Inpatient Rehab had all the extra tests like FMRI, EEG and some had even fully diagnosed brain damage. Not to disappoint you, but we all had EXACTLY the same program of rehab therapy treatments despite our totally different symptoms - because at that time that was the only option offered for FND on the NHS.
So unless things have changed immensely, the fact remains that FND is considered a condition (from what ever individual's initial course or onset) that requires retraining of the brain. But regardless of the test results, the only difference will be how long you undertake each of the Therapies/Treatments, not what treatments are tailored to you.
Ultimately, you leave the Rehab with options of which discipline therapy to continue, that you think will improve things back in your everyday life i.e to help you manage daily living.
Key point I would add: Normal Physiotherapy is not specific enough for overcoming physical limitations with FND - you will need to look at Neuro Physiotherapy which covers a wider Neurological set of techniques and conditions such as Stroke, Multiple Sclerosis, Cerebral Palsy, Parkinson's - maybe as well as FND if you are lucky enough to find someone dual trained in that too!
Good luck,
Look for the calm in the Storm!
Thanks for your reply and I will look into neuro physiotherapy and/or treatments related to it.
Good morning,
Anything that you can take as a treatment and that does you good, is good to take.
You are a care partner and as such, it is up to you to test who suits you best. You can always start a treatment and stop it if you see that it does not suit you
Thank you Lecture for your reply.
Thank so much for the reply
Good Morning BossStateofMind
Yes, I have utilized several therapies. Regarding physical therapy, I discovered that it must be very specialized to focus successfully on your body’s needs. I attended 3 months of weekly or twice weekly sessions of Neuro-physiotherapy. The focus was on training my brain to regain balance, minimize dizziness, be able to turn my head while walking, and to use my good side (left) to help my brain mimic proper gait movements on my bad side (right). I worked on increasing my ability to operate without supports and walk on different surfaces. It involved tons of repetition and daily homework. Worked on proposition with eyes open, then eyes closed while performing movements.
Fortunately I am located near a city in the USA that has an excellent neurology department. It took one hour for husband to drive me to appointments, then wait for me while I had my one hour appointment, then drive another hour to get home.
I found that standard physiotherapy was a waste of time and money for me. I needed very specialized services from folks knowledgeable about FND.
I spent a solid 10 months in CBT. It helped me a lot! However, my neurologist was adamant I work with one specific neuropsychologist. I spent about 7 months on her waitlist. Again, this provider is very knowledgeable about FND and works to criteria. Your time with her was not limited to a certain number of sessions. It was until I was finished and successful in utilizing her teachings. Again there was a lot of homework. It must be done. This neuropsychologist completely adapted an existing workbook on seizures and modified it for my migraines, motor difficulties, and other FND issues. I became aware of triggers and how to identify auras that inform me that something is about to happen. That is extremely valuable. It was totally personalized. She is big on Progressive Muscle Relaxation. I do it daily.
My Occupational Therapy experience was more on the educational aspect. Development of modifications, breaking tasks into segments, repetition of movements to retrain my brain was a big part. The most useful was the Speech Therapy for TWO reasons. Firstly, learned how to get around my inability to say a word in my head by using descriptors, examples or alternate ways of providing the same information. Example, I could not get my mouth to speak “ 6:00pm”. So after trying for a moment, I turned 6:00pm in 1800 hours. The info was there. I avoided my struggle with the “SS” sound in six and used the eighteen word instead. My mouth formed that sound just fine.
Secondly, I learned how to eat without provoking choking episodes. Physically, my swallowing mechanisms are fine. Sometimes my throat spasms and food gets stuck. Also, triggers are anything dry, crunchy or too big a piece of food. I drink a sip or two of water before every bite or two. Sauces and gravies became my friends, veggies are cooked to slightly mushy, and eat little pieces slowly. No raw veggies or chips without dips. Cookies are often dunked in a liquid (coffee, tea, milk) to overcome the dryness. It takes me about 45 minutes to eat a meal. Instead of eating plain baked or fried chicken, I will have chicken pot pie or chicken salad. Here again, modifying.
I have had rule out tests for many things. The biggest was the Neuropsychological Assessment. I was on a 5-6 month waitlist for that. I took this assessment before much of the other stuff. The test was about 6.5 hours for me. I hear it can run anywhere between 3 hrs and 8 hrs. It was incredibly grueling and exhausting. Since fatigue is a huge problem for me, I was sooo tired. I actually was laying across a desk with my arms and head down while sitting in a chair. But, I got through it and the info helped my neurologist tailor treatment for me.
I don’t remember exactly which brain tests I have had. Results were mostly good so I guess I didn’t worry too much.
I see a psychologist about every week or two to help guide me in coping with my FND. I am having a very hard time adjusting to this disorder. It is so random in symptoms and changes all the time for me
The takeaway is get very specialized treatment from major institutions if at all possible. If a provider doesn’t have a strong understanding of FND, there is little point in spending time, energy, and money there. Fortunately many places will use telehealth now for some things.
I try to find as much literature as possible updated research and publications from major research hospitals/institutions I read scholarly articles Be your own advocate become as well versed as possible but beware of quackery!!!
I hope I have been of some assistance to you. I wish you well and enjoy the Winter Solstice, which is today 12/21/23.
HenriettaPoultryfoot
I find your post very helpful, can you please tell me where you received so much help which hospital? Thank you in advance !
Hello Cornelia35.
The hospital I am working with is Johns Hopkins in Baltimore MD USA. I am extremely fortunate to live within a reasonable driving distance (no need for a hotel stay most of the time). Some appointments have been done virtually, so that’s easy!
If you are in the USA, there are a few excellent hospitals that know FND. Mass General in the Boston MA area and the Mayo Clinic in Minnesota are reported to be very active in the FND realm. Lastly, if you are in the UK, University of Edinburgh is the bullseye of FND research.
There is a professional organization strictly for FND. It is called Functional Neurological Disorder Society. This group is for physicians (many neurologists), highly trained psychologists (mine is a neuro-psychologist), and psychiatrists that work with FND. They have a huge symposium every year (or two, can’t recall) somewhere in the world. This year’s was in Verona Italy.
My neurologist discovered a way I can join even though I am a patient, not a professional. I do not recall how he did it. I am considered a Community Member or something like that. The fee is only $50 each year. I cannot attend anything and cannot ask questions or comment. I can view prior stuff. It is a great resource. The down side is it is all in doctor talk.
I hope some of this long statement is helpful to you. I wish you the best, Cornelia35.
HenriettaPoultryFoot
Than k you so so much! Your response is very helpful. All the best 🤍
I saved your post as it is very helpful. Thanks
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