Functional Neurological Disorder - FND Hope
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Functional Gait Disorder

Hi:

I am a 63 year old women that was diagnosed with this horrible condition. I don’t know if I believe in this condition. I was so active all my life and out of the blue I woke up with water in my right ear and a few days later I was staggering so I just assume it was an ear problem. I have been all over the place to get a diagnosis. Finally the Mayo Clinic tells me that I have Functional Gait Disorder. My only symptoms are: I become lightheaded when I stand at least 90 percent of the time when I stand. I stagger when I walk but not all the time. Also I become lightheaded when I walk at least 50 percent of the time when I walk. I know some of my triggers like when I look up, down and after I work out like after I get finished walking on the Treadmill and when I also weight train. When I walk on the treadmill I do not experience any symptoms. Does this sound like Functional Gait Disorder? Not to me.

Any ideas?

Thanks

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It could be functional gait disorder. Look for times when you don't have the gait order. Do those times explain your functional gait disorder? An example would be of when you can walk to do one thing, but you can't walk to do another thing, even though the walking would be equally strenuous.

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Hi

No the walking is totally different.

I can walk normal without a problem then all of a sudden I am staggering and I become lightheaded. I do know a few triggers. Looking up or down will cause be to become dizzy and after my workouts I will staggered after 5-10 mins. after I workout

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Has anyone explored POTS with you? (Postural orthopaedic tachycardia syndrome). It would be worth investigating from the sound of things.

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Yes, I had 3 Tilt Table Test

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Hi there,

I get what you are saying.

I have had a neurological Functional dissorder for over 5 years.

Its laughable that the doctors have to give every type of dissorder names!

A Functional gait dissorder could be due to many things.

Functional-Meaning something has gone wrong in the brain, Gait, the way in which we walk, and Dissorder, meaning its not as normal, or should be,

Start at the beginning, what could have caused your brain to get things wrong, eg, trauma, stress, etc.

One of the major symptoms of a neurological dissorder is head pain/dissiness, etc upon standing, why? nobody seems to know, for your information, as well, ear infections seem to play a part in this.

Any Neurological Functional dissorders are bad news, and people, of course don't understand them.

I, like you, had a good life, happy and very active, exploring all there was. I used to work out, and still try to, the light headed and giddy feelings have stopped me.

Fully understand what you are going through, have to go now but will hopefully write more to you soon, perhaps to help, i send all my love to you, I KNOW HOW HARD IT IS.

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Your ability to walk on a treadmill but not well while off of a treadmill sounds like functional gait disorder.

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Hi:

I don’t understand that at all I can even run on the treadmill but when I get off I stagger within 5-10 mins. afterwards. I also feel like my brain is like 2 fried eggs.

Sometimes I fell like my brain is not connecting with my feet.

Does anybody have a problem with driving? example: I will be about 1/2 mile from my house and I simply do not recognize where I am. I feel lost. I do find my way after 1-2 mins. later.

I did go pick up a report today from a Movement Disorder Doctor that I saw about 2 years ago and the report says: suspect at least in part Functional component. I wished the Doctor had of told me that. She(the Doctor) basically told me that I was making this up and faking my staggering and I needed to see a psychiatrist. We had some ugly words after she told me that I was faking my symptoms.

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She deserved those ugly words after she told you that you were faking it. Maybe you should file a grievance against her through your insurance company.

When you are running on the treadmill, your mind is in one mindset. Off the treadmill you are in another mindset. See if you can run alright off when not on a treadmill. It may be that when you relax, the unhelpful gait programs start to run. There is hope for you.

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Hi:

Yes I can run off the treadmill with no problem. I decided that I am not going to run any more I had bad knee pain and hip pain after my last run. I will just walk. I had a Labral tear repaired about two years ago and I know that my other hip also has a tear. I did a lot of walking yesterday around the Downtown area. I notice when I make turns I losse my Balance maybe because I slow down and have to start up again. I also noticed I can walk semi fast outside without a problem but as soon as I slow down or make a turn then that’s when I staggered, I feel like my brain gets totally confused.

Does that make any sense at all? Also when I bend over to pick something up I get extremely lightheaded and if I try to walk I will also staggered, that is new.

I also have cycles where my blood pressure and heart rate fluctuates from anywhere from 170/100 to 85/40 and the heart rate goes from 38 to 110. I did have 3 Tilt Table Test but basically normal when I was tested. I guess they were my good days when I was being tested. I do have a few more test at the end of May so maybe something will show. I did read in my-chart that one of the Doctors indicated that I have Functional Gait Disorder. What can they do for Functional Gait Disorders? Any type of Therapy? Thanks

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Firstly,I want to say how sorry that I am that your doctor thought you might be making it all up-how redculoius!-perhaps you need to change your GP to one that is up on this an symapthetic. I understand completely When you say that you don;t feel your brain is fried and that your feet feel not connected to your legs.

YES, SEVERE PROBLEM WITH DRIVING-YOU MUST SURRENDER YOUR DRIVING LICENCE TO THE DVLA ,AS YOU SHOULD NOT BE DRIVING, YOU MAY BE A LIABILITY TO OTHER DRIVERS, OF COURSE THIS IS HARD TO TAKE, AND LIKE YOU SAY, YOU DROVE AND THEN DID NOT KNOW WHERE YOU WERE, I CAN SYMPATHISE WITH YOU,BUT YOU MUST SURRENDER YOUR LICENCE OTHER WISE YOU COULD HURT AN INNOCENT PERSON. IF THEY FIND THAT YOU HAVE NOT THEN THEY MAY MAKE YOU,

yOU NEED TO APPY TO THE SOCIAL SERVICES, WHO WILL BE VERY KIND TO YOU, AND WILL UNDERSTAND WHAT YOU HAVE SAID HERE, YOU NEED TO TELL THEM ALL YOU HAVE SAID TO ME. THE SOCIAL SERVICES ARE THAT ONLY PEOPLE WHO CAN HELP YOU, YOU, OF COURSE HAVE TO SWALLOW YOUR PRIDE, MAKE AN APPOINTMENT WITH THEN AND I AM SURE THAT THEY WILL SEE YOU HAVE A DISSABILITY AND WILL HELP YOU AND PAY FOR WHAT YOU ARE DUE TO HELP YOU DEAL WITH THESE PROBLEMS, THIS MAY ALSO INCUR GETTING YOU AN UNDERSTANDING GP, TO HElP YOU THROUGH THIS YOU NEED AN EXTREMEMLY GOOD GP, PHYCIARTIST, COUNCILLOR AND ANYBODY ELSE WHO WANTS TO STICK THEIR NOSE IN!!!!

I would like to write to everybody on this page, to give everbody hope, and to make sure that thier symptoms are now being taken seriously, as i know that A Neurogical Funcial Dissorder, Or Post Trumartic Syndrome has been taken serously by some doctors in this area and they can provide exelent treatment. Will look at this 2morrow. I really feel for you and want to help greatly. ........please keep watching and reading this page-thankyou.

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Hi:

I will not report myself to give up my license. Are you kidding. I do not have a diagnosis yet. I don’t believe I have FND. I can drive without a problem. I do not get dizzy when I drive.

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Have you been accurately tested for Lyme Disease and co-infections by a Lyme Literate Doctor to rule this out as the possible underlying cause for the symptoms that you are experiencing?

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Yes a long time ago and the report said equivalent. I have no idea what that means. I don’t think I have Lyme disease. I live in a big city.

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The gait disorder when you walk slowly that disappears when you walk fast has been seen in other people's functional gait disorders. FND can affect the autonomic nervous system, i.e. blood pressure and heart rate. As far as what can be done for functional gait disorders, one could get physical therapy from someone who specializes in gait disorders that are caused by brain disorders. Also, reading the book Functional Neurologic Disorders may help. It may be that your gait disorder began when your brain noticed a true malfunction in your gait (it's normal for a nervous system to have at least one glitch per day), and then your brain took too much notice of it and made your gait disorder more permanent.

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Hi:

Thanks. I woke up yesterday early had 16 ozs. water before I got out of bed, just to see if that would help. Well I decided to go Downtown and pick up a few things I felt great I also had a 24 ozs of water with me to sip on.

Got home and my husband wanted to go to the gym and I went with him. Had a great workout, I weight train with moderate weights. After that we went into the Grocery Store which is in the same building then within 8 mins. I felt dizzy just out of no where I almost fainted I couldn’t moved at all for about 2 mins. I felt like my feet was frozen to the ground. Well my husband was able to find a spot so I can sit down. I felt better within a few mins. but then my left side of my face started to hurt, that is something new. I told my husband that my left side of my face hurts including my left eye and head only the left side. He was like well you’re not slurring your words so you will be ok. As we were walking to the car my left arm/hand started to shake violently for about a minute. I do have the shakes in the left arm occasionally. Does all this sounds like Functional Gait Disorder? I am hoping that the Doctor will tell me this is heart related, because least they can fix that. Or could this be some kind of Autonomic Dysfunction? Is Functional Gait Disorder in the same family of Autonomic Dysfunction Or some kind of Dystonia?

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Hi red....it's late n i have to go to bed but wanted to write u just a little..i hope to write u more later...yes this sound definitelylike fnd...please trust me..thefirst thing to start healing is u must BELIEVE in this condition..the healing starts there(doesn't end there though)when i saw your first thoughts were u didn't believe..i had to write u b4 i went off to bed...my wife has fnd..diagnosed a year n a half ago..craziest year of our life...she went from being in a wheelchair for4months unable to walk to now switching jobs n now she's working for the same hospital she was unable to walk in...i believe if she would have believed from the start like me she would have healed sooner...do u believe in PTSD? If yes just know fnd is basically the same thing...believing in and education on fnd is where the healing starts..i have other things written on here that may help u..try n browse previous things i have written until i can write u later...keep your head up and know theres light at the end of the tunnel n also remember people on here are here for u and care about u very much😊 sending hugs..

Chris

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Well said.

Believe in yourself and education. Read everything. Absorb positive messages. You have friends on here. We suffer too, in our own ways. We have something that no (few) doctors know about. What it FEELS like. All the frustration and anger, the falls, the good days and the bad. Being able to do something and not. It's a b*tch!

I too send hugs!

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Hi Chris:

Yes, I do believe in PTSD. I am not going in no wheelchair if I can help it. I really don’t know what I have, I have a few more tests in late May. I am hoping it’s my heart, because that can get fixed/repaired. I do have Small Vessels Spasms, which I take Nitro when needed and I also take L-Arginine so I can keep my Spasms under control. One test that I am going to have is called Endothelial Dysfunction and I am seeing a Ear Specialist for a peripheral Arterial Tone Test. On my-chart one of my test indicates that I have mild peripheral Vestibular asymmetry. Thanks for the information. I will keep in touch.

Thanks

Debbie

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I'm at work now can't write much but one thing i forgot to write last night was that u went to Mayo clinic...that's awesome..it's the #1 hospital in America...maybe the world.. Definitely America...i wanted to so badly take my wife there...they are the best..please listen to them..this diagnosis seems unreal but u must have confidencein them drs... think of this Have you listened to them doctors for 63 years now...most likely yes right... if they said you had an earache you would take the medicine they give you.. if they said your arm was broke you let them cast it right..they are the #1hospital..it's an amazing place...believe them n whatever they tell u to do..trust them...u must believe though..it can be fixed..i wanna help everyone i can...can iask who is sending u for these other tests your going to have done...also i know u said your not going into a wheelchair if u can help it..that's y the sooner u believe your diagnosis..the better..your lucky mayo found out what's wrong when they did..earlyknowledge is best..with my wife her legs just gave out out of nowhere....we were normal everyday people..no drugs.rare that we even have a drink..we ran the track every other night...anyway the day her legs went all we were doing was grocery shopping for dinner...shesays Chris I'm feeling really wierd..my legs feel wierd ..something is wrong..i told her to sit n drink water..after15 min she gets up n takes a couple steps but needs to sit back down...i get her back up n We walk to the car n five ft. From the car she collapses but i caught her n threw her over my shoulder n had to literally throw her into the car n go to the hospital..just happened out of nowhere..then she was in a wheelchair for4 months

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Hi:

I want to believe in them but I can’t, not right now. First I did not see a a Neurologist I saw a D.O. Neurologist which to me is not a real Neurologist. Second, I went to the Mayo Clinic in 2012 for a Heart Problem and they misdiagnosed me. I ended up at the Cleveland Clinic for the correct diagnosis (Small Vessels Spasms) I was treated at the Cleveland Clinic since 2012 thru 2017. My Cardiologist retired and there was not a Cardiologist at The Cleveland Clinic that was familiar with my condition. I ended up back at the Mayo Clinic because they have a Cardiologist that is very familiar with this disease which they did not have back in 2012. When I made the appointment to see this Cardiologist at the Mayo Clinic I also wanted the Mayo Clinic to help me with my other health problems. When I got to the Mayo Clinic I did not see the Cardiologist that I wanted to see. So now I have a Cardiologist at the Mayo Clinic that is not familiar with SVS which is ok for now. I really need to find a Neurologist that can figure this out for me. I did see a Neurologist at the Cleveland Clinic about 3 years ago and that fool told me and my husband that “I don’t have a happy neck”. Are you kidding me. We were speechless. Here I am still looking for the right Doctors. I do not have any luck with Doctors. I will keep looking. Do you know that it took me over 30 years to get a diagnosis for my heart. I know now that my condition did not have a name 30 years ago. I was never believed and was told that it was all in my head and go see a shrink. I don’t want to wait another 30 years for another diagnosis. Maybe I do have Functional Gait Disorder but I want an expert to tell me that. Where do I find one.

Thanks

Debbie

So sorry that I had to vent.

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Hi Debbie..U vent away all u want..i want u to..its healthy...u have been to the best two hospitals...i would listen to them...my wife went to university of penn(number6th i believe I the country)it's in Philadelphia...i read your post on your feet being stuck to the ground...yep id say u have FND...you might be getting frustrated when u read that but I've studied up on this so much the past year and a half that it's crazy..my wife's feet have been frozen to theground several times...most fnd patients don't believe the diagnosis...took me awhile to get my wife onboard...have u ever heard of dr sarno..he was a man way ahead of his time..he wrote the mind body syndrome book..n others..he's an amazing dr that changed people's lives....debbie patients don't want to accept this diagnosis because it's labeled as a mental health issue..please don't let that stand in your way of getting better..it's not even a mental health problem like that..it's just more of a stress disorder....your mind n body used to handle stress..anxiety..fears..repressed memories in a traditional way but now it's taking them and creating physical symptoms..the symptoms u have are very real and not made up..your brain thinks it's helping u..we just gotta thwart your brains strategy n flip it back to handle stress and anxiety and anger..etc.in the traditional way that u used to..please take me serious..right now your symptoms your having are not biological or organic..they are psychological...top doctors in America have given u a clean bill of health concerning your symptoms...be happy about that..u don't want biological or organic problems...it's better to have fnd which is just your mind turning stress into physical symptoms..tell yourself im ok to handle stress and anxiety..seriously..tell your mind right at this moment n when symptoms pop up that u are ok to handle stress and anxiety and anger the way u used to..that u welcome it...when your a child u throw tantrums and fits and u know what..it's ok to do that..it's healthy...tell yourself u basically have a harmless condition and are ok...tell your mind remember u are totally fine handling stress the way u used to..u want to yell or cry or pound the table real hard..tell your mind u welcome it back to handle stresses and anger and fear and anxiety the traditional way that u are use to....

sorry about going on and on but i care very very much for everyone on here..more hugs again to u debbie

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Hi

I retired in 2007 and I am a very happy person very active and I am not under any stress at all and I do not have any anxiety either, never did. My husband laughs at people when they mention stress or anxiety that is causing my health problems. He tells people that I am the most relaxed and stress free person that he knows. I love to travel, cook and workout. I have a very good life and a great husband. So I really don’t think it’s stress. Thank you for caring.

Debbie

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Debbie i feel like I'm talking to my wife...lol..u guys sound exactly the same...she used to talk just as u do now... she would say I'm the most stress-free person i know .... my whole family including friends say Chris you're the one that stresses Tina is the one who's relaxed and doesn't give a damn about anything and is very happy..they would say r u sure this is fnd...it took me a long time to see the light..we have a beautiful family..and a happy life..when u think of stress...it doesn't have to be bad stress...let me ask u..are u a perfectionist...yes/no...be honest with me....how about a good deed doer always trying to do your best..yes/no.. or are u a person that can't say no to people..u yes everything?let me know

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Hi:

I can definitely say No to people. I pick when I want to be perfect so not all the time

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Hi:

I am not a good deed doer either. I do what I can for people on my own terms. I do not worried about what people say or do either. I am going to wait until I have the rest of my test done at the end of this month. Maybe something will show up besides a D.O. Neurologist stating that I have FND in my-chart. I will keep in contact with you. Wish me luck that it’s not FND.

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open.abc.net.au/explore/114378

I do wish u luck...but if it isn't fnd i hope it's something easy...fnd causes lots of problems but it doesn't kill u and that's important...yes .get them tests done but if they come up negative id really start trying to go the fnd route....if it's the only diagnosis given what hurts trying to fix it...take any medicine u can get for it..if medicine is educating yourself then read...mediation is also medicine for fnd..another is cognitive behavioral therapy(they even have workbooks u can do it in on your own at the bookstore)... if it's the only medicine you have then what the hell right...might as well try you know what I'm saying..keep in touch....if it is fnd maybeit will just affect u a little...u can even lose your ability to smell(that's my favorite symptom..i don't panic much when my wife is dealing with that one..here is a link I'm sending u..take care

open.abc.net.au/explore/114378

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Chris,

I had to deal with the very same difficult scenario. My very first symptom was getting out of bed one morning and my whole body going into full non-epileptic convulsions. I had head nodding and stuttering/slurred speech for the day. That was how everything for me began to turn upsidedown!!! Awful right!

I was diagnosed in 2014 by two, not one, neurologists as having FND and GP saying with possible fibromyalgia. All and every test including MRI had come back normal.

The one thing that really annoyed me was being told to try to come to terms with this quite theoretical, umbrella term FND which was based on physical tests yet nothing showing up in bloods etc

Where would I be if I had just succumbed to this diagnosis? How would I be if I became complacent in my ill health and put all my faith in their diagnosis? I knew in my heart and soul it was a cop out and they just didn't know what was wrong with me!!

Oh here why don't you read the site neurosymptoms.org you might even cure yourself while reading it!! THAT WAS ACTUALLY SAID TO ME! I felt empty with tears rolling down my face leaving that clinic that day.

I kept researching. Through contacts I got to send my bloods to Germany to be properly tested for Lyme Disease and low and behold the results came back positive with 2 co-infections. My immune system showed being completely suppressed also.

Lyme is known as the great imitator. People are being misdiagnosed with CFS fibromyalgia FND Parksinsons etc. The correlation of symptoms between Lyme and FND is ASTONISHING!!!

Insurers do not want to know Lyme patients as they do not profit from it.

I implore everyone to keep looking for answers and only if and when you feel like you've eliminated all possible avenues should you consider it could be FND. Don't just accept what you're told. I'm so glad I didn't.

Wishing you the best.

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Can i ask where u sent your blood in Germany?everyone has to do what's best for them...I'm happy u found out what was wrong with u..yes lyme is the great imitator...i know that...the only thing i can do is offer to people what i know in hopes it helps them..this is a FND site so i try to inform people about FND but once again people need to do what they feel is best for them...i just hate to see people delay their healing...the earlier u know u have fnd the better...i say to people y not at least have an open mind...try healing methods for fnd if that's what they think u have..even if your being tested for other things...y not just keep trying to heal fnd while waiting to see if another illness is found...its not like u take an actual pill n can hurt yourself..the actions u take tho heal are all good methods for everyoneto use I their everydaylife..everybody in the world can benefit from these ways even if nothing is wrong with them..so what do u have to lose...sometimes the drs do mess up but so u know u have more of a chance being diagnosed with something elseand really having FND then the other way around.... the percentages are higher that way...take care cbs....i wish the best for u

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I had my bloods sent to Armin Labs in Germany who specialise in Lyme Disease and all of its co-infections etc They are very thorough.

I understand your compassion and wanting to help so much but I think what I’m trying to convey is for you to not push people too much to make themselves come to terms with the diagnosis of FND until many other things have been ruled out. This was done to me also. You began to probe Debbie about maybe having stress in her life and was she a perfectionist etc and I just find that not the right way as of yet.

After I was diagnosed with FND I was then referred to their Neurological Psychiatrist who began to delve into my childhood background and it seriously made me extremely paranoid and anxious that maybe I was suppressing something that my body was now manifesting in physical ways. It was quite distressing. And after all of that unneeded crap it was Lyme Disease all along. :(

I just need people to be aware that a good portion of the time there is definitely something lying dormant that is overlooked that is the cause of these symptoms and FND can be a bit of a Cop-out for some neurologists when they don’t know what else it could be.

If based in the US igenex is the place to send bloods to.

Once again I don’t doubt for a second your love and compassion for others and your sincere efforts to help. Xx

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Functional Gait Disorder is not in the same family as Autonomic Dysfunction, but both are neurological problems. Autonomic dysfunction can be caused by an FND. Functional gait disorder can be in the same family as functional dystonia (both are FMDs), but not all kinds of dystonia are functional.

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Hi:

Thanks for the information. All I need now is the proper Doctor to figure out what I have. What kind of Doctor can do that? I finally have my Movement Specialist Doctors notes and she indicated that I have Functional Components. I don’t know what that means. I also have notes from a Neurologist that I saw about 3 years ago and he indicated that he cannot say whether you have spasm of arteries to the head, it is possible but I cannot think of treatment.

I do not have Vascular Disease but did have Small Vessels Spasms, a process the brain might share.

Not one of those Doctors mention any of this to me.

I am so confused with all of this I just wished this would be over soon.

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Thank you

Very interesting

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Yes very interesting....i hate that everyone on here is dealing with fnd but it is one of the most interesting things I've studied..n boy do i study it ever since my wife was diagnosed a year n a half ago

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DDHi:

I say interesting because that video is not me. I can walk. What happens when I walk is I get lightheaded than I staggered. The lightheadedness causes me to stagger. Thanks

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I know your good at walking...that's y I'm thinking your lucky..if u do have fnd hopefully symptoms don't get worst than what u already have...if u do end up with fnd know u can contact me if u need any advice...if u do end up with fnd it might take u awhile to believe it (90 percent of patients don't believe it for awhile)..i hope u get better..sending prayers to u and your family...one more question..have u had any kids or grandkids move out of your house in recent years or lost control of something you've had control over

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Hi:

Never had kids, I was a working women worked in a man’s job and loved it. I was an Operating Engineer at a huge water plant. I was exposed to many chemicals I also was gassed a few times with Chlorine and exposed to asbestos for many years.

Thanks

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Redhead

You sound like a gutsy lady who isn't gonna take any more. Good for you.I was misdiagnosed (a dozen different ways) after a post-op chemical clash. With a lifelong history of mental illness (bipolar) diagnosis that was the easy target. This despite being mood stable for several years. The most thst the 'eminent', 'leading' neurologist in Ireland (specialising in movement disorders) could say was that 'perhaps' I 'might' have some functional issues. He later agreed with Professor Mark Edwards' diagnosis of FND/FMD.

DO NOT GIVE UP. OK I know that you won't. I struggle most days (I have a bloody minded streak a yard wide according to my wife). I will notrest quietly in a wheelchair even if it means I am on first name terms with the triage nurse in ny local A&E Department.

Dammit. I am only 65. I have a good life ahead of me. I am not giving up. The many supportive posts and suggestions help. BIG TIME! THANK YOU ALL.

So keep faith in yourself. Find coping mechanisms (yoga, exercise, music, CBT, the medicine of a good wife/partner, Buddhism, mindfulness or whatever works for you. But this is a journey. I can't tell you or anyone how long it will last. But I know that giving in is not an option. It never is. Never is.

Please forgive me if I have stated the obvious or simply repeated what a lot of other caring, compassionate fellow suffererers./carers have already said.

Dylan Thomas, the Welsh poet wrote "Do not go gentle into that good night. Rage, rage against the dying of the light."

I am not going gentle! I am raging against the dying of the light.

OK?

Robert WT

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Love your attitude robert...your right on with the coping mechanisms...i pray for u and all others...lets get u out of that wheelchair brother...how long ago were u diagnosed with fnd

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Hi Cmb,

In July 2017. The chemical clash was late in November 2016. A 'relatively minor' operation with 4 days in a ward to recover turned into 11 days in ICU and then 17 days in the ward. Principal symptoms were myoclonus (tremours) and an abject inability to stand, walk, pass water into a papier mache bottle with any degree of accuracy, or feed myself. I couldn't talk too good either.

Serotonin syndrome was the first diagnosis (made after the usual time it takes for SS to go away by itself). A convenient 'tag' but (I believe) a wrong one.

Now struggling to improve.

Anxiety is a big issue for me. I suffer with and as a result of it. I can be reduced to a quivering jelly by an angry word (or the perception of one). Not a nice position to be in and definitely NOT nice for my dear wife.

I am looking for other coping mechanisms all the time. :ight and sound box. Cognitive behavioural therapy, physio, just damn well trying to walk and do more. Each and every day. It goes on.

It does not end there. I will carry on.

Just you see!

Robert

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I know what your going through my wife had or still has some of the same issues...i started meditating with her on our own....then i found free classes so i started to take her to them..very soothing..i suggest u look into them...i guess your chemical clash triggered your fnd...it was your trauma..i can see y it would be....redhead63 had the same issue didn't she..she says she had no stress but I'd definitely saythat chemical clash is definitely stress n traumatic

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G'wan Robert!! Us Irish don't go down easily!!! LOVE YOUR ATTITUDE YOU LEGEND!!

Xxx

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Hi:

I am just praying that this is not Functional Gait Disorder and is something different. Maybe I have an over load of toxins again.

I will get tested again just to make sure. For some unknown reason my body cannot detox naturality like most people.

Next week I am off to the Mayo Clinic for a few more test and I am so nervous that I am thinking about not going but I know that I have to.

Who knows maybe it’s my ear throwing me off. I did have 3 Tubes in the right ear then finally the surgeon had to do a procedure called Balloon Eustachian Tuboplasty with myringotomy with Tubes. A fairly new procedure.

Or maybe it’s my Sjögrens. I did have a positive lip biopsy but another Clinic disagrees because I don’t have a typical lip biopsy pattern. Doctors like to put everyone in the same group. One pill fits all. How ridiculous. If I am diagnosed with FND then I will be considered a nut job by many Doctors here in the USA.

I also have a small and narrow basilar artery in my brain. The Doctors tells me that my other arteries took over. I feel like I am getting a lack of blood flow to the brain when I stand up. I feel great when I am lying down and sitting. It’s when I get up to a standing position. Also for the first 40 mins. when I get up in the mornings I feel great no staggering or lightheadedness and very alert, I actually feel great

This is got to be something simple I do not feel sick at all just lightheadedness and staggering.

I also feel that the lightheadedness is causing my staggering.

Thanks

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Hi Everybody:

Just came back from the Mayo Clinic and I had a Movement Specialize Doctor that gave me a diagnosis of Neurological Functional Disorder. Sorry I just don't believe that. I also had an abnormal 24 hour Blood Pressure that indicated that I have Hypertension and Hypotension.

I just read that this morning on My-Chart. My Cardiologist did not tell me that because the results were not in. I am going back to the Mayo Clinic in about 10 days to have a CT-Scan of my Sinuses because I have Fluid in both of my Mastoids. My Primary Doctor at the Mayo Clinic did tell me that he read notes from a Doctor at the Mayo stating that there is a possibility that the Fluid in my Mastoids can cause lightheadedness. I had a call today from the Mayo to let me know that I need an evaluation for the BEST Program for my NFD which is a long waiting list. I will get on the list but meantime I will keep looking for an answer. In my heart I feel that I do not have a Neurological Disorder. I believe this a a Blood Flow problem and now that I have documentations that I have Hypertension and Hypotension. Is this an Autonomic Problem? I did have Autonomic Testing but all negative according to the Mayo Clinic. What does and how can you have high and low blood pressure? Thanks for listening and you guys are all wonderful. Will keep you posted.

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It sounds like Orthostatic Hypotension.

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Thanks, that is what Cleveland Clinic told me 3 years ago. I guess I didn’t want to believe them. I had many test done at the Mayo but they are claiming that I do not have Orthostatic Intolerance. I must of had a good day when I was getting tested. I also have fluctuations of my GFR Number. Is that part of OI? My Creatinine Number is slightly elevated and the Mayo wasn’t to concerned with my Kidneys.

Thank you.

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Hi,

I'll keep this brief. If you go to the FND Hope website (fndhope.org) and:

From the Home page scroll down to you see > "GET INVOLVED TODAY' > Click on the round sign with the FND Hope badge on it below the word "Awareness".

This page is "building awareness" > The second article down is a video. It's of an Australian woman who was in a similar place to you. She recovered by the way. Please, watch it. You see the longer you wonder and deny it and struggle on, the stronger the wrong pathways in your brain may get.

You have the chance of recovery. That's great news. FND does not preclude all other diseases, but you have FND.

Good luck. xx

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