" I've been through the desert on a horse with no name" ...

Credit to the band America, lyrics from the song title "Horse with No Name " (1972 - U.S.)

Community friends.

Letter written today to Beth Rush, Ph.D. of Mayo Clinic in Jacksonville, FL. I believe that I met and spoke with Dr. Rush during FND conference at Emory U. earlier this month.

If I remember correctly, she was instrumental in getting our list of anonymous questions regarding FND into the proper hands. No answers to those yet however, FND.hope advised this week they will be seeking answers.

Dr. Rush was only medical person I remember that spoke on behalf of the needs of our sufferers and our care giving families to whom I again express my endless appreciation.

Dr. Rush is a psychologist but has research credits that include work on "association of C9ORF72 repeat expansion in patients with frontotemporal dementia and /or amyotrophic lateral sclerosis and also in making neuro pathological association between cerebellar abnormalities and cognitive impairment in carriers of the C90RF72 mutation."

Big words aside, it occurs to me that she is seeing links between genetics, certain protein expressions in parts of brain (including motor cortex) and their effects on cognitive function. The desert may have a flower blooming for us.

I wrote to remind her of us and to let us know if research spills over or turns focus into the realm of our unknown.

As far as the horse goes...

We continue to encourage it to come out of the desert and find its way into the starting gate for the NEXT race. I did not say the first race as that has already occurred and progress has been duly noted.

I am very heartened by the wide variety of active discussions in the community across the whole spectrum of symptoms, diagnostics, medications and other therapies that may come into play with our disease variations. All options remain open.

NOW, for the no name stuff...

We can each rightfully call what we have by any name we wish to use. We can also associate the name of our choosing with particular test results, symptom profile or success outcomes from treatment or therapy modalities.

But,

I wonder out loud... no, I beg of this community ... to consider one possibility that may work to our advantage as we seek out those willing to research and investigate cause of suffering:

Because of the risk of misdiagnosis of underlying conditions and the possibility that multiple conditions may exist at the same time, would we be better off just saying our diagnosis is incomplete, unknown or uncertain as opposed to letting FND always be the centerpiece around which everything swirls.

I am not asking anyone to give up the FND label. I am saying that it may be more difficult to get researchers focused on the problems and their cause if they first have to contend with all of the precedent theories that have been layered on FND.

Maybe scientific research in our case would be more efficient starting from a blank slate. Start anew with the patient and avoid dealing with how individual physicians gave out this diagnosis. We seek new science here. That is critical strategy.

I know its a risk and we may get nowhere with it but I want to give researchers the most room possible to do their thing. We really need their help.

Thank you for listening. Will never give up.

Dan / Seattle

[nurmihusa]

The whole problem with the world is that fools and fanatics are always so certain of themselves, and wiser people so full of doubts.

Bertrand Russell

[nurmihusa]

Have you noticed how VERY SURE certain very wrong medical professionals often are... people in general, too.

[nurmihusa]

Naming a thing is powerful. As politicians, ad execs, doctors and WITCH doctors know.

So far the official name given what's going on with my body is "anxiety, panic attack and not Parkinson's." I'm the one who's done the work to recognize it as PNES/conversion disorder/FND (in that order of discovery). I have an appointment with my primary care doctor next Monday and I'm going to push him to put one or all three of those names on my chart. Not that it will make a damn bit of difference in my "treatment" - which consists of a tiny prescription for Ativan for when things get out of hand and I need the manifestations to calm down for a few hours.

But I think the time has come to get it named. Add me to the statistics. My sense is that I should have him put all three names on the chart. Opinions?

[Hidden in reply to nurmihusa]

Nurmi.

You should do what helps you. I think that is the need in all of us.

As you have said and as I have quoted you, " as the patient, you are the expert in the room."

What I fear and all that I ask of every sufferer of these dreaded symptoms, is that the names chosen not wind up being used against you to skew the search for the truth.

I want only the truth. I need some help from folks way smarter than me to get there. I can no longer live under the veil of not knowing and being kept there by medicine's desire not to have to do the leg work to solve this problem.

This is hard. My community here has told me this is hard. But, they have also shown a whole lot of fight - just like you and me.

I am ok because I have hope. I know you share that with me.

Good night. My prayers for a better life for all.

Dan / Seattle

[Hidden in reply to nurmihusa]

Hi nurmihusa, what has me concerned is my 1st dr wouldn't help me with pain relief as he was convinced I had depression and anxiety and he wouldn't budge from it dispite private nuerologist emails twice. I now know 2 years on I do have depression and anxiety but I definitely didn't have 2 years ago. My new dr has recognised this and has now done tests for B12 and others that he thought my previous dr had done because of my nuerologist emails, although they have come back as ok I am still taking them. It still seems to come back to first being diagnosed by your dr as depression and anxiety and they will refuse to accept anything else, which means you have to go private to get help, to find out it's too late, you should have been seen by a nuerologist earlier.

[nurmihusa in reply to Hidden]

I have found some research that suggests even if your B12 levels are "normal" you can still feel much improved by taking massive doses of it. Will be having a convo with my doctor next Monday about that.

As regards depression - of course we are depressed. We are sick and not being treated for what ails us. Whatever else might be biologically contributing to it, that's huge.

With regard to treatment for depression, they love to hand out pills for low seratonin. I'm not low seratonin so SSRIs only give me nasty side effects. My biological depression seems to be from low dopamine. I've been taking a supplement for that for a year now and while it hasn't cured anything, it raises the basement floor as it were. Tyrosine. I'm taking 3000mgs. You feel a boost immediately if it's something that will help. None of this wait six weeks BS like the SSRIs. I know some folks who haven't responded to it, but I know others who have. Worth a try. And it's OTC.

[cgarff in reply to nurmihusa]

I personally don't like conversion disorder because the experience I have with that is.. You are now labled as a psych patient, and docs have the right to ignore you. Oh wait that s FMD/FND. Given that they are all the same thing basically. At least that is what I am told.

Cheryl

[nurmihusa in reply to cgarff]

Any excuse to make their job easier and they'll grab it. Yes. True. But in that are they any different than the rest of us? We all want quick, easy answers.

I have friends and family who have had what are termed "substance abuse problems" - if the medical docs can lay THAT one on you they really are thrilled. They believe that diagnosis absolves them of any responsibility to treat a patient. Instead of asking..."What led this patient to take this drug and what did it do for them that they needed done?" There's a reason folks refer to it as self-medication. Hello?

Mental health professionals also want easy solutions, their bean counting bosses demand it. "I can cure that patient in three notes!" "Make it two, my quarterly review is coming up and your numbers don't look good."

All of the above means in a very real sense we have to organize treatment for ourselves and not rely on them to make such decisions for us. It shouldn't be that way, but it's the reality we're faced with.

[cgarff in reply to nurmihusa]

So true nurmihusa,

I actually had a psychiatrist one time that told me.. Give me 4 weeks, if I can't help you by then, I won't keep you coming. Cocky SOB. Needless to say I had him completely stumped in 4 weeks along with many others. I don't completely accept this, because I have tried so hard for many years, have been shoved from place to place by docs and therapists, and still seem to know more than they do about this.

Just keep praying someone will wake up and get a clue that yes if they can't medically explain us, and if psych didn't help, its time to go back to the old drawing board and rethink their decisions.

As Dory from the movie finding nemo says... Just keep swimming, just keep swimming.

Not giving up yet!!!

Cheryl

[nurmihusa in reply to cgarff]

Yes. We DO know more than they do about this. And when it comes to HOW this whateveryoucallit affects our other illnesses, our bodies, our families and our lives - we are orders of magnitude more informed than they are. It's about being firm and clear and persistent with them. Eventually we do find folks we can work with.

[Kazandoz]

Here here Dan. Wise words, thankyou!

[malalatete]

Dan

There is a similar debate in the land of ME where the medical community likes to call it CFS or CFIDS over the pond where you are, much to the annoyance of those suffering, as the definition of 'syndrome' is a description of a basket symptoms, not a diagnosis of a condition , but it gets handed out like M&Ms (to Americanise an English idiom) as if it were.

I suspect you are right that there are many different things going on here - there will be a spectrum of symptoms and probably of undiagnosed conditions, sometimes because of error, sometimes because the meds are stumped.

For researchers to make meaningful progress into finding what they are dealing with and particularly whether it has any organic basis, which I think is where you are trying to head, they need some kind of criteria on which to base their selection of participants for trial investigations.

One of the problems for the ME community with 'CFS' research has been that a lot of it has included people who are 'tired all the time' but who do not have the neurological issues of ME as described by Dr Melvin Ramsey in the 1980s. But the CFS-branded medical community does not believe ME exists!

It may be that we all have different conditions - highly likely if you think of FND (as I do) as usually meaning 'not got a clue why but your brain has gone wrong'. It might be interesting to compare things across our patient group here such as onset, whether symptoms relapse and remit, whether the condition fluctuates or responds to triggers, progression, what therapies (drug based and otherwise) have worked and how, as well as a list of what symptoms are attributed to the condition (this in itself is difficult e.g.my fatigue was read as post-viral initially, then transmuted to ME/'CFS' when it didn't go away, but no-one could explain the leg spasticity. Now I know that when the legs work I do not have the fatigue the rest of me works - mostly: I have had cognitive function tests during remission which showed a loss of between 25 and 50 per cent of my pre-illness function - so whatever this is some damage has been done to my brain....)

That sort of data gathering would be a good starting point for 'FND' research, - what on earth ARE we dealing with here and should we all ha e been given this same label and it very much ties in with your 'diagnosis incomplete' idea.

FND = Frankly Not a Diagnosis ?

[Hidden in reply to malalatete]

Malalatete.

My respect for your capabilities to analyze and then communicate soars off the charts. It was already there but now it has gone even higher.

You deserve such respect because after all you have been through and continue to experience, you remain open to all the possibilities. I like that. I keep trying. Will do my homework and try to catch up but honestly, all I have left in body and mind is going to get thrown at the research end. I may not add anything to the conversation but as long as I can afford postage stamps, I will keep writing letters to say "Hey! Something is going on over here. Come and take another look...."

With great admiration and continued best wishes.

Thank you for understanding what doesn't work in me.

Dan / Seattle

[Hidden]

I am a non believer. I was excited last year after 2 years of symptoms and no one believing me when I finally got diagnosed with FND as I was told, it's not that bad, go away and read this website and goodbye. I thought this is great just like when you have an injury and you know there is a healing period and an end in sight, I believed that I would improve and get back to work. I am not good at sitting around. Three years since my accident my symptoms are getting worse by the day. Year one had lots of pain but could get about, year 2 having lots of falls and blackouts to now where I just have the 'circle of symptoms' I call it. I never get a break as the neurologist told me. I just go from one to another or more. My energy levels are at an all time low and I used to be a fitness freak and worked 80 hour weeks by choice. I'm not about to lie down and accept this diagnosis when the Medical community haven't even heard of it so you get no consideration if you are seeing another specialist or in hospital your FND is ignored when you should have a care plan completed and a nurse eg asking you how it affects you. Would they prefer to be surprised to see you lying on the floor unable to get up then not know what to do? I also had my doc recently refer me back to physio for my original injury from my accident which started these 'symptoms' and he wrote it was psychological pain. I had to tell him it's not psychological pain it's 3 years worth of pain I just don't tell you I have been in permanent pain because I don't like taking lots of medication, but iv now has enough of being in pain. When you are positive for physical tests e.g. Tendon reflexes etc surely that says there is something going on there. I once had a trapped nerve in my neck which was diagnosed in emergency by a physio who did massage and got my muscles spasming. I had a really bad day last week and not only my spine which is always in pain but every muscle in my back was hurting and I told my physio if you were to do that same massage I'd be jumping all over the table I'd be in such spasm. Surely that's not all in the mind!

[Hidden in reply to Hidden]

Dear Amallia, I too live in pain day and night, who ever I've seen have caused spasms from foot upwards and into my head, after seeing what has happened after their help they no longer will see me, my nuero physios wouldn't touch me at all just watched me in seizures and wrote to professor Edwards. When in past rushed to hospital I was left in agony and ignored, I couldn't tell them I was in agony as seizures lock everything up. Now just live in pain waiting for 2nd appointment in London. The nuero physios gave us a paper they have printed off for me to carry with me that I have FND and it isn't just imagined but is real, that is all they could do for me. I keep the letter but have no one to show it too. But it's a letter that could have helped over last 2 years and I'm still keeping it. Hope this makes sense to you as struggling to think now. Best wishes Lisa.

[Hidden in reply to Hidden]

Lisa-anne.

Kindred spirits again!

I had to write my own letter and hang it on a string around my neck so people would not have me taken by ambulance to hospital every time I had episode while out by myself.

Please keep writing about your experiences. You really help me.

Thank you again Lisa-anne.

We keep trying together.

Dan / Seattle

[Hidden in reply to Hidden]

Amallia

Thank you for writing your story. I share memories of what you have been through. I do not want to see more folks hurt by this "circle of symptoms" that you described so accurately.

I was reminded that being empathetic to others is not my best trait for dealing with some aspects of having unexplained symptoms.

After thinking about it, I keep going because the answers lie in all of us as people and not in the machinations of ill-equipped providers of medicine.

I thank you for being here. More work to do but more of us to do it.

A hope for a good day ahead.

Dan / Seattle

[Hidden]

Dan,

I don't see how FND wouldn't be the central piece when others like me have given this diagnosis before excluding organic possibilities.

Just because someone is a doctor/neurologist doesn't mean they are familiar with all neurological diseases. They have specialties. For example, there are numerous early warning signs for PD, and I have all but the mood disorder. That is why I am seeing a specialist. Some of my symptoms go back a decade.

Therefore, it is imperative for researchers to know how we were diagnosed because there is a commont theme among many people here, giving a general diagnosis of FND that can't be applied to all.

If FND is a result of a nervous system disorder and/or a dysfunction of how the brain processes, then why is no help given beyond CBT or similar tactics?

[Hidden in reply to Hidden]

Notinmyhead

I accept your point of view arguments. I cannot find scientific basis for FND. That does not mean there is no basis. I just cannot find it.

If I am diagnosed with FND as I am, how can I expect research to start from that diagnosis and build on it to uncover cause? As you, I find no one with my symptom profile. Yet the FND term implies commonality.

Do we investigate what is common in those with the diagnosis or do we start by looking from scratch at what are actually shared symptomatic traits when unexplained symptoms exists. There is a difference. Misdiagnosis and multiple diagnoses taints the population. Medicine can use the FND tag unencumbered. This may further obscure commonality.

I am not a researcher. I am a country boy. But, if I want to choose from the red tomatoes on the vine, I don't examine every green one too.

Research needs an objective. I think they may struggle when they are confronted by how FND diagnosis has evolved.

I keep an open mind. It's hard. But I am waiting for cohesive scientific facts to emerge to support our diagnosis. It has to be more than just having "more than one unexplained neurologic deficit."

I respect yours and all other points of view. We need to shake something loose. Soon.

Best of days to us all.

Dan / Seattle

I really like the "why" question you posed at the end.

[Hidden in reply to Hidden]

Dan,

I respect everyone's point of view, although I do not agree with them all. I am not making an argument, just stating my viewpoint.

I am not sure how you noted that your symptoms, like mine, are different from others. My symptoms are 90% consistent with those of the PD, and the 10% with atypical PD. Neuropathy is linked to it. I have communicated with PD patients who have the same symptoms, similar progression and also told it was in their head and/or functional.

Misdiagnosis is the key. Neuros, who lack experience and expertise, are quick to label FND because they may not recognize symptoms or are too lazy to investigate further.

Focus should be that FND is the last option when everything has been ruled out.

This is not in my head. And I will not accept FND.

[Hidden in reply to Hidden]

Notinmyhead.

I apologize. I was using the term "arguments" to describe the validity I was giving to your viewpoints which I valued.

I apologize. I was only comparing our individual symptoms to others in this community to reflect the uniqueness of what each of us might have under the FND umbrella. I did not mean to challenge your profile of symptoms to those of PD sufferers.

Neuropathy had been my major hope for finding a non FND label cause. I would never imply that it had no relevance in your case. That goes against my basic rule of not challenging how others view their symptoms. I apologize.

I stand here dreadfully embarrassed that I did allow the medical community to give me the FND diagnosis before ruling out all other causes. They gave it and I accepted it because further investigation and treatment were promised. Those two things never materialized.

I find myself at the mercy of the community as I have staked my position here on the single premise that without science the FND diagnosis may not be all it is thought. My only way to fight that was to ask for unbiased research. I never want anyone to reach the point where everything else is ruled out so this is all that is left. I deeply regret if I have caused harm.

I am not a bad person. I only want the truth.

Dan / Seattle

[Hidden in reply to Hidden]

No offense taken. We have uniqueness because we have different diseases.

The commanality we have is that we are screwed by the professionals.

No reason for you to be embarrassed. It is the medical professionals who should be embarrassed!!

You are a good person who is betrayed by those you sought help from. Continue doing as you have, seek answers, help others, but don't let some idiot Neuro define you.

Good luck!

[Hidden]

The letter sounds like a good idea but sad that it's come to that. I was given a walking stick recently but I either can't coordinate walking with supporting the most affected side or iv had days where my arms are too weak to use the stick. I'm dragging it around or tripping over it and just want to throw it away. My physio said that having it would make life easier as people see your stick and give you a seat on the bus e.g. And that was great but the stick in the end didn't work and it's frustrating looking healthy but not being able to walk more than 5 minutes or stand and having to ask elderly people to let you sit next to them when you look perfectly heslthy. I don't want to walk around with a big 'disabled person' tag on.

[Hidden in reply to Hidden]

Dear Amallia, I totally get where you are coming from, apart from the fact pain has definitely aged my face I don't look ill, even my own mother cannot comprehend I'm ill as she can't see it. My partner bless him tried to get me out before Christmas as he knows I love Christmas. It was horrific, the cold, the pain, the noise, a little lovely old lady stopped and asked if I was ok, I just kept nodding and nodding, she clutched my hand and just didn't know what else to say, it was lovely of her but I got so upset. The seizures just set in and had to wait by car to ease off enough to get in and get home. I've not been anywhere shopping since. But I know unless in a seizure I look ok. No one can see anything your feeling, why you can't talk properly, why you repeat things cos you can't remember what you were talking about. I hate my wheelchair but am going to get nowhere without it. The disability tag might just be a name but it hurts still. Best wishes to you. Lisa. 😊🤗😊🤗

[Hidden]

Yes I hate each time I have to say I'm disabled. And iv had experience where over the phone if you try to describe your symptoms, say - I have memory and concentration issues so slow down (because I have to jot this down) iv been told by a government employee working in the disability section, 'well if you have memory issues how to you know that happened?' Talking about a previous call. I logged a complaint and got an apology. I know when I'm having a foggy day so note anything of importance so this doesn't happen but I too have found with the senses I have days where loud noises are intolerable such as the ad breaks between tv shows where the volume goes up or roadworks. I go shopping first thing when it's quiet and try not to buy heavy stuff or il lose whole arm power by the time I walk 30 seconds home. I think getting out in a supported environment is good but for me my home has become my safety net.

[Hidden in reply to Hidden]

My home too has become my refuge and my prison depending on how I crawl out of bed in the morning, its takes so much energy if that's the right word to even go out. I'm going to see my parents this afternoon although my partner has to take time off work to take me but he's realised I'm going downhill. Can't wait to see them it's been months as they don't drive and I live in the sticks so no buses. Sun shining must be a good omen for today. Going to get ready as it takes so long to remember to get ready. Lots of love, excited Lisa. Xxxxx

[Hidden in reply to Hidden]

Good luck and have a good day. Xxxx

[angelite]

Dan, I am often singing this ( great song ! ) - it seems to sum up my position perfectly.

I would like to think that this 'Functional Symptoms' category was originally created with good intentions by medics, specifically to describe symptoms that were medically unexplained but not thought to be of psychological origin. However, I feel that this clear water has now been muddied by differences of medical opinion, bias, abuse out of convenience etc. It is not helpful that websites we are directed to twin this with conversion disorder - either it is another name for conversion or a wholly separate issue. Treatments effective for one would not necessarily be effective for the other. It seems that the former 'rules' of neurology are no longer being 'bent' to accommodate this diagnosis - they are being outright broken in some cases. Changes in reflexes, abnormal blood tests, EEG's, are all being ignored in favour of this label in the UK. Neurologists seem to have become too reliant on scan proof, rather than trusting their own knowledge and judgement. MRI is good but not God - things can be missed, especially with the standard 1.5 T we use in the UK. Add no contrast to that and it is barely worth doing the MRI for inflammation purposes. How the scan is interpreted by the one who reads it can also place potentially relevant abnormalities wrongly in the 'natural age spots' category. There is always a margin for human and machine error. I reference Mal a la tete's 'missed' aneurism which was found when another neuro looked at the same scans. Yet so many patients are dismissed due to a 'clear' scan ( myself included ).

After 3 neurological attacks, all seemingly triggered by viral or bacterial infections, resulting in further disability each time that remains stable until the next attack, I have not yet given up on finding the name of my horse - I need to find a vet with time an interest to do relevant tests and rule things in/out before it is consigned to the knacker's yard !

Angela x

[Hidden in reply to angelite]

Oh my dear Angela.

You have saved my day for me. My regrets at how I let medicine do what they wanted to do have been buried once again.

I laugh and my hope returns that I will find that "vet" too.

I give thanks every day for you and all my friends here who provide the daily means for me to cope.

Along with my spiritual beliefs, you all provide the strength to continue the search.

God Bless you. To a much better day.

Dan / Seattle

[cgarff]

We do need to remember that the medical profession is filled with individuals that are human, and are going off of what they are taught. Medicine is basically "an educated guess! "

I myself would love to see more doctors break out of the norm on this one. Think outside of the box, and not just go off of what they have been taught. They need to try new things.

One thing that I am frustrated about is last June a paper was written about FND and that it wasn't all in our heads by Dr. Carine Maurer at the National Institute of Health under the direction of Dr. Mark Hallet. That indicated that they have found a spot on the brain in the temporal parietal junction or TPJ for short, that may be contributing to this disorder. Yet at a recent conference that I attended in Atlanta GA. Regarding FND.. Absolutely nothing was mentioned about it by Dr. Hallet. Really?

I personally am grateful to have a Neuro who doesn't believe that it is all in our heads, sure there can be psychological issues here and there that can contribute to it, but that can't be all like it is mentioned above or there would be more people with this disorder and it wouldn't be such a mystery. I am grateful that my neuro is willing to think outside the box a little on this and search for new answers and not just take what is being said. It ticks her off that docs just throw us by the wayside because they don't understand it, and don't try to.

Cheryl

[Hidden]

Cheryl and Nurmi.

Thank you for how you write about things. I love "Nemo" and swimming. That how I feel. You both keep spirits up.

May this be a blessed Sunday for us all.

Dan