A patient’s journey of recovery from Functional Neurological Disorder at Mass General Hospital

Featuring Dr. David Perez, MD, MMsc, FND Clinic Director at Mass General and patient Kyla Madonna Kenney.

[@Emily-sl9id]

I’m fifteen and I have this. + somatic symptoms + anxiety + depression + PPS (non epileptic seizures). Thank you for sharing your story.

[@sorinx7974]

Aye I’m also 15 and diagnosed with FND 🤙

[@Emily-sl9id]

@@sorinx7974 ayeeee. We’re too cool for everyone else in the world 😎

[@tklhb0529]

My FND started when I was 15 also. I am 55 now and still have it. It is life changing for sure.

[@melancholymountain1232]

I’m 14 and I had my first severe episode that led to my diagnosis a year ago. I hope you are all doing well!

[@BTGameZ7]

I was diagnosed with FND when I was 8 and now i'm 14. And what makes it worse is that I have an anxiety Disorder as well

[@dredayz18]

This song is awesome and amazing and makes me cry in happy tears I was diagnosed yesterday and my research lead me here. Thank you for such a beautiful song. God bless you.

[@hermesgeko]

I was diagnosed at the end of last year after nearly 5 years of not knowing what's wrong. I am currently in PT and Neuropsychological therapy. I'm learning to use tools both psychological and physical tools. It's amazing for such a common disorder how alone you can feel so it's wonderful to hear others stories.

[@BenQotsa]

were you on antidepressants at the time?

[@kathyhuddle5904]

Stunning song and voice. This presentation has helped my daughter, Megan--she cried listening to your song. Peace be with you.

[@koober1]

I had a very similar experience. I describe it as "I woke up and I fried my nervous system". I have been doing therapy for a year and I'm going to start neurofeedback.

[@juicezzz992]

Thanks for your story and song Kyla amazing singing 🎵

[@Worldwheelchairwarriors]

Thanks for sharing. I'm a mess. But I will see a Neurosurgeon tomorrow and see what he says. Thanks for the song as well, it was beautiful.

[@PoppaWheelies]

My wife has been diagnosed with FND. Woke up May 21st with tremors and an awful headache. It’s been a disastrous road with no relief . We are currently admitted into the hospital for the 5th time, just trying to treat the headache . This is a struggle . Our lives are flipped upside down .

[@kylakenney6507]

Sounds very familiar. Thankfully, she was given a diagnosis rather quickly. I hope she is able to get into a clinic such as Dr. Perez's at MGH. There is help for your wife. Support from you and believing her is so important. It sounds like that is what you are doing. It's scary to experience FND. Very isolating. Please tell her.......... She is not alone. Coming to the MGH site certainly is a great step in finding treatment. Be persistent. Tell her she's got this. She can do this. Believe.

[@sl4983]

Was they any factor that occurred prior to this happening? And new medication etc?

[@sunnystar505]

I have had two functional stroke episodes. I tried cognitive behavioral therapy and physical therapy. It's been almost two years, they said i would get better but I'm still the same.i am suffering everyday and I'm scared this is my life

[@carolinekelly8481]

It's a fancy name when they cant find a solution

[@kylakenney6507]

Mass General is amazing. Don't be afraid. There are answers. This is the right place to go. Dr. Perez and his team are incredibly knowledgeable and caring. I was scared too. But there is help.

[@TEWMUCH]

Omg I know the feeling! I started in those same places and nothing got better for me either, but then I moved on to a gonstead chiropractor and acupuncturist. My body feels a lot better. So far all my symptoms aren’t gone but I def see it helps with every session.

[@aussiepete67]

Sunny, don't be scared, dont give in.. just don't give in to it.. I call it (fnd) "The Thing".. it's been kicking my arse for 5years. I understand that everybody's journey is different but the fundamentals are pretty much the same.. stay strong, dont give in, be informed regarding your medications. For what it's worth, I'm cheering for you🇦🇺👍

[@sunnystar505]

@@aussiepete67 thanks for your encouraging words, I have accepted that this is how it’s gonna be. Still scares me but I get over it faster. I just find other things to distract me. How r u handling it?

[@julsbythebeach6326]

Thank you Kyla for sharing your story. What a positive journey. A beautiful song. I am newly diagnosed. Not going to let this beat me. Your story is inspirational.

[@kylakenney6507]

It won't beat you. You can do it. There is help. If you'd ever like to chat you could Facebook me.

[@lauren3220]

@@kylakenney6507 Can I message you?

[@kylakenney6507]

@@lauren3220 absolutely. Just not on this site. Search the other comments and my info is there. KZbin won't allow me to put my contact in comments. ❤️

[@sebastiancampos4197]

Hello, guys! One of my closest friends was recently diagnosed with FND. Half of his body is paralyzed, he's receiving treatment and has made some progress since then, so I'm not too worried about him. But the interesting thing about his case is that he had several dreams prior to the onset of his symptoms in which half of his body was a statue. Has anyone here ever gone through a similar experience?

[@TheUpsidedown44]

I haven't been formally diagnosed (still in the process of ruling out a different neurological reason) but I've experienced what your friend has as well. In REM sleep you become much more aware of your bodily state so I'll have dreams about either being electrocuted or having acute pain in a specific area that is a problem region.

[@lucyl6425]

A beautiful voice singing such touching words! Thank you for sharing your life, I was thinking this is all of what I’m going through, I’m not alone. After being diagnosed today and being given handouts on FND and given a few websites to check out I was left on my own to find a CBT specialist, a physical therapist who understood FND and an occupational therapists. The doctor told me flat out that it would not be easy and I felt completely overwhelmed and my tremors got worse. I would have hoped they had referrals to give me. Checking the internet I have not been able to find anyone who list that they specialize in FND. Does anyone have suggestions on how to find the specialists I need?

[@annawilliams7431]

So grateful for this song .. where can I get a copy please

[@TheMcKenzieHaus]

Stress has real effects on your body. I wouldn’t be surprised if stress literally breaks someone Brain and causes permanent damage. I doubt it’s the only cause and more complicated but wouldn’t be surprised if stress is the straw that breaks the camel back.

[@TheMcKenzieHaus]

@@alexandragruber6757 nah, you're being ignorant.

[@sl4983]

@@TheMcKenzieHaus nah, you're being a jerk.

[@lisanolan9780]

Did you lose your licence and if so for how long?

[@robertrussell2845]

Hi I’ve had f n d for 5 years know. I’ve been unable to walk and been in a wheelchair for 4 years know, chronic back pain is the main problem and that’s what kicked of my f n d . Thanks to mr j stone ive learned how to accept and live with it

[@TEWMUCH]

Lord. Have u been to a gonstead chiropractor? And/or a really good acupuncturist. I have found Relief of symptoms With them. You could have pinched nerves and blocked energy.

[@TEWMUCH]

And this may be annoying to hear but in addition to the above you MUST be positive, you must BELIEVE you will be healed, and you must be willing to confront and let go of past hurts.

[@DChristina]

Does anyone know if there’s help in the Portland metro area?

[@ameliaguess3788]

Does anyone want to talk , I just got diagnosed with this after 2 years of excruciating nerve pain

[@SatyanaJupira]

Yes

[@sl4983]

Did you get the v?

[@mattrozdoba5660]

Sorry to hear

[@wendybird5104]

I wish I had a doctor to help me like that. I have had FND since 2016, and I am at the end of my wits and strength. I have seizures, speech problems, tremors and now my legs aren’t working properly, I’m scared. And medical professionals are making me feel like I’m crazy.😢

[@vannevers]

What state do you live in (if youre in the US)?

[@wendybird5104]

@@vannevers I’m not in the US

[@vannevers]

@@wendybird5104 Poo. Wishing you luck on your health journey

[@shanaye6951]

Sorry to hear this. May I ask what type of speech problems you go through?

[@terriet]

I need so much help as I feel my family do not understand what the triggers are for my fnd. I am in theorpy and do really well for short amounts of time. Am positive most of the time, I am the go to person for my family and as such as they seem to say they understand I am not sure they understand the triggers.

[@DChristina]

Wishing you all the best

[@lisadraper8447]

I was just diagnosed 2 days ago and honestly I don’t know where to start…

[@jonnevandijk8455]

Take is easy dear! Take your time!!! Good luck!

[@terriet]

How do you remember the date? I remember the shaking but I can not remember the date.

[@vannevers]

I write daily in a journal so that's how I have my date.

[@ellemeno0]

I wonder if there is quality help in the Seattle area...? It is really unfortunate that people often don't get ongoing support and care when given these kinds of diagnoses. Also, the CBT therapist should be better educated about physical symptoms and how it is the brain, not a direct, conscious thought that gave the symptom (and also better funded so that we can hopefully have enough of them. I only get to see mine every 3 weeks because there are too many patients).

[@kylakenney6507]

Hi Mia. I'm so sorry you are suffering with FND. I have learned a lot working with Dr Perez and his team at MGH. If there is anything I can do to help you feel less alone please reach out to me. Sometimes just having someone understand makes a big difference.

[@carolinaissohappy]

@@kylakenney6507 hi. I've been diagnosed with this like 5 months ago here in Spain. Sadly I cannot find support from the health care system, I feel very very alone, I am desperate, I get sick and the doctor just sends me home, and then back to work and then sick again...I don't know what to do!! I get migraines, and it is very difficult for me to walk, so tired and exhausted...

[@pahukolofoou]

@@carolinaissohappy I feel for you and I totally understand. My son was the one diagnosed with FND but the whole family went through it with him. The worse part is when people don’t believe that it was a genuine illness😳. Even some doctors don’t have a clue how to approach such a condition because they never study about it in medical schools. My son was only 15 when he was diagnosed. He was luck that after 8 hospital emergency visits, he was finally diagnosed by doctors who knew about FND and only because the neurologist that saw my son have been studying a Dr. Jon Stone’s lectures and work on FND. Dr.Stone was in Scotland at the time. My boy’s last seizure was around Nov 2019, after just 4 therapy sessions with a psychotherapist.

[@susieq8008]

Mia...there are 2 clinics in the Seattle area which is where I have told my son about. Please get a referral.

[@WDBsirLocksight]

so whats the difference between ASD and FND...? they virtually have the same symptoms I'm wondering if ASD is a type of FND...? maybe you could say FND is a sub-type of ASD as they mention about OCD and tourettes

[@juicezzz992]

ASD is a neurological difference that persists throughout life from birth, this is a pathological issue that can be treated. The body systems affected are the same, there is a lot of cross over with psychological treatment because of what is available ...the disorders are not variations on the same thing though

[@juicezzz992]

ASD has a social affect, FND is more biological

[@curlyq4531]

How does someone with possible FND get doctors to admit there is such a condition. Doctor always comes to his conclusion is Parkinson's. no symptoms of Parkinson's I only see FND. Pills are a major treatment according to doctors. Don't agree with their pill treatment they walk away from patient by saying "cannot help you". I'm trying for two years trying to find help for my sister. I found one neurologist that works also with psychiatry I am in process of inquiry of his services. Is this the correct path? My sister has no interest with drugs. Homeopathic doctors are useless also. All they do is healing hands. Acupuncture has been done twice for her series of treatment from two different doctors. I keep searching. Anyone have any ideas where I can find therapy or treatment for her????

[@nomadicexplorers]

Look into Dr Lonsdale and thiamine deficiency

[@ethancoster1324]

I was diagnosed with this this April, but I had the symptoms since January. It's bloody hell trying to function when you're ticking and shit pours out of your mouth involuntarily.

[@allisonphillips668]

I used psychotherapy alone and recovered almost 100% it's a trick of using the right mental language, preventative measures, and Freudian therapy

[@ethancoster1324]

@@allisonphillips668 I'm seeing a neurologist about it. He's of the opinion that it's a hyperkinetic disorder ala to much dopamine in the basal ganglia.

[@allisonphillips668]

@@ethancoster1324 yeah that's because psychosis can cause tics sometimes. Do you also have psychosis?

[@ethancoster1324]

@@allisonphillips668 Narda.

[@baracoa38]

Hey is it possible to speak to Kyla I have FND have been unable to see a neurologist yet. Feel like giving up would be great to chat to someone who understands

[@kylakenney6507]

Absolutely. I'd love to chat with you. You could Facebook message me if you would like.

[@lukejo7994]

@@kylakenney6507 i could use a little help too i cant find your FB

[@kylakenney6507]

@@lukejo7994 my FB name is Kyla Madonna-Kenney.

[@kylakenney6507]

@@lukejo7994 my email is [e-mail] If you would still like to chat.

[@maviccolarina8615]

I am suffering this FND now I am worried about my job but now I am on may short dissability ☹️ when and how can I cure I am 40years old from Canada, I hope somebody can answer me thank you

[@prettylou]

Can someone help me please. I’ve had it for 10 years and it’s driving me insane. I’m having CBT right now, referred by the neuropsychiatrist with someone who hasn’t got a clue. This is do depressing.

[@kylakenney6507]

I completely understand your frustrations. If you ever need to chat please feel free to Facebook message me. You will be ok. Believe. Someone will help you. Search until you find that person. Never give up. You will find what you need.

[@TEWMUCH]

Omg Please try finding a really good acupuncturist and a gonstead chiropractor! I’ve found relief with them. It could take a year of sessions with the chiro, but it’s worth it.

[@kylakenney6507]

@pretty Lou How are you doing? Has CBT helped you? I pray your doing ok.

[@prettylou]

@@kylakenney6507 hey :) thank you for responding. I had 12 sessions of cbt it was unhelpful. currently considering ending my life.

[@kylakenney6507]

@@prettylou please call 911 or go to the hospital. THERE IS HELP. You just haven't found it yet. Breathe and believe. FND will not beat you. You are stronger than it, whether you realize it or not.

[@starsaran5720]

Sir kindly guide me i have severe head pain like needle inserting pain in side and back of head near to ear and also dizziness Not able to apply oil in head It cause more dizziness Taken all medical test nothing showing some doctor are saying bp Some doctor are saying psychological problem No sleep no proper food Lot of worries for past 6 months Seems to like living in hell

[@sorielyflores7184]

I have the same exact issues. I have disks in my neck that are herniated. They haven’t found anything in my brain but i get those headache i know what you’re feeling

[@agnieszkamuszynska6734]

@@sorielyflores7184 it might be the issue called trigeminal neuralgia or occipital neuralgia, I have been suffering it for years, almost that same symptoms. You should consult your doctor and ask them for further test

[@samcross6597]

I challenged the people and said im going private im not happy with what there saying 4 years gone Tuesday a neuroligist diagnosed F N D I really felt that this woman understood i feel someone is getting this ...... the doctors a physio made me so angry i was distraught i stopped beleaving i stopped talking ..... i can deal with what i know .... im ready for the fight im waiting on neuro therapy any help i wud be helpful

[@kylakenney6507]

You absolutely can do this! It's very frustrating when people don't understand. There are people and doctors that do understand. And you will get there. If you ever need to chat please reach out .... I'm not a doctor but I live it and have been blessed with a remarkable, understanding doctor and his team. There are ways to treat FND.

[@ilovepickle]

I know what you mean and im sad you and to go through this too

[@lukejo7994]

i have this too. wow we are suffering. reach out if you like.

[@jayla106]

Samee

[@gaffar1398]

This is not in your head I have it too

[@danielasutherna8191]

I want to appreciate Dr Madida on KZbin for treating my Dad of his Multiple sclerosis with their natural meds🌿🌿

[@53j3]

I have time when l am well and time l cannot move. I start with tremors then couldn’t speak or walk. I have been in St George in London for a week waste of time had physiotherapist for one hour a day and told they couldn’t help with my walking. They want to put a square peg in a round hole well sorry that does not work. The consultant said he would see me while l was a inpatient never happened. Microwave food so did eat all week food was disgusting. When not well l rest and when well l do what l can. The muscle in my body are weak l do most of my job on my hands and knee. I was treated for Parkinson for years then FND. I am not depressed or crazy and l wish they would not put it down to this. I have a wonderful life and truly blessed. I had a very bad car and that when it started.

[@sl4983]

Did you get the v?

[@53j3]

@@sl4983 Hi do you mean do l have a virus no. FDN is a software wiring problem with the brain, it was explained by Professor Edward at St George’s in London. I do have good periods but also have None Cystitis Fibrosis and have just pick up RSV virus have been in hospital but it has set my FND off not been able to walk have very bad tremors. I stay positive l am bless with an amazing family. Xx

[@sl4983]

People are having this after the phakx

[@davejohnson3822]

Its not a nuerological disorder

[@danavilleneuve2332]

Educate yourself please

[@davejohnson3822]

@@danavilleneuve2332 - Im very close friends with the TOP Doctor in this field. FND is psychiatric

[@davejohnson3822]

@@danavilleneuve2332 - My doctor is an expert. Its all in your head

[@lordkellith538]

@@davejohnson3822 genuinely asking...how does one get out of their head to get their body working again? My husband has been dealing with hemplegia of the left side for 10 months now with minimal improvement. He wills his hand to move and nothing happens. He believes it will move, yet nothing happens. I tried surprising him so his left side would ha e to respond appropriately and he got clocked with a ball. The only time his left side responds appropriately is either when sleeping or when using a estim machine and mirror therapy.

[@davejohnson3822]

@@lordkellith538 - its all within the brain. psychological issues causing bad nuerological movements