Conference on FND.

Hi Friends.

My wife, daughter and I are using our rapidly dwindling savings to attend a two day conference titled "Partners in Treatment Innovation for Functional Neurological Disorders.". Daughter and I are registered as patients. My wife is attending as our caregiver as neither of us can travel without assistance.

It is in early March at Emory University In Atlanta. I think you can access the brochure by typing in the conference name and going to the .PDF file. If not, I have it downloaded and would make it available to you if somebody help me understand how to do that.

The first day session includes patient and doctor conversation time to hear our stories.

I have been so touched by talking with some of you and reading your posts, that I want to make myself available to present questions and thoughts that you might have for these providers. I can only collect what you want to say in writing and make it available at the conference for them. I can not force them to take our submissions or even comment on them. What I can do is record any answers or observations they make and post them back on this site. I will also share whatever we learn during the conference by posting here.

It is a daunting task for me but I want to do it for us all. I make no promises other than to try my best. I believe this is my last chance to go to one of these gatherings. I am so weak now that even the thought of traveling across country seems out of reach.

PLease:. Post online what questions you want to ask and thoughts you want to express to these providers soon . I will have to have time to compile them in a logical way shielding all of our privacy by not referencing any source information. I will make copies from here at home and take them to the conference. I will do what I can.

More than anything, I think speaking up as a group makes an impact. That is my goal. The suffering is immense and the lack of comprehensive diagnostic, care and insurance coverage issues not to mention financial and emotional burdens on patients and families must be addressed. I am down to one eye right now from facial spasms so I will stop.

I will only pass on what you want to say. I can only report back what they say. They will not talk to us as their patients. I just want to find out if they are doing anything or just talking about what they should do.

Let me know. I will report back.

Dan

[Lucy-15]

Absolutely amazing. Thank you for thinking of us all on here. Will be back to you soon. Take care Lucy in Brighton UK.

[Hidden in reply to Lucy-15]

Thank you Lucy. Many experts from your "neck of the woods" are scheduled to be there.

Dan

Seattle, WA

[LEEJUNFAN in reply to Hidden]

Hi Dan!

Thank you so much for a very thoughtful post and on behalf of myself and my wife Kim, we truly wish you all the best at the venue you will be attending, even though it will be a strenuous trip for you all.

Great to have people like yourself on board who are trying to gain some light at the end of a dark tunnel for many folk out there.

I have not forgotten your post that you sent to my reply concerning my wife's Neck Spasms and I will keep you informed as she see's her Neurologist this month.

We live in Manchester,UK but I see you're a Seattle lad.

I'm hoping to visit there one day as it's always been my dream because I love Martial Arts and I wish to visit Bruce Lee's resting place in Lake View Cemetery.

Maybe when we win the lotto!

Sorry to digress.

Please keep us informed Dan.

In all sincerity to you.

Tony & Kim xx

[Hidden in reply to LEEJUNFAN]

Tony and Kim.

Thank you for support and kind words. Will report findings from event as I can.

Come enjoy our city. It is a wonderful welcoming place. The site you mentioned is nearby. May have to get family on an outing to pay tributes there.

Let us know about Kim.

Best regards.

Dan

[LEEJUNFAN in reply to Hidden]

Hi Dan!

Yeah would be great.

It would be nice to enjoy a Starbucks Vanilla Latte with you all whilst sitting on the front of Lake Washington.

We both have always loved Seattle and it's scenery, especially The Space Needle which is great the way it revolves.

It would be great if you ever make it to Bruce's site and you could e mail me some photos.

I'll leave you my e mail and we can correspond on a social basis if you're happy with that.

It's as follows:

[e-mail]

So nice to have met.

Hoping to hear from you more whenever time and health allows you.

Best Wishes Dan!

Tony & Kim xx

[Hidden in reply to LEEJUNFAN]

Tony and Kim.

You know our secret for how to get thru the day in Seattle. Coffee!

Now residing at home several blocks east of Lake Washington just south of the I-90 floating bridge going to Mercer Island. No view of water but lake is pure beauty.

We can go picnic at Gasworks park and watch the city and seaplanes. Picturesque.

Will try to get over for your photos when family can take me. Need little better weather as just coming out from under snow this week.

Still getting used to roses blooming in December, grass greening up in winter and rhododendron so big I just want to go climb up in them..

Try Butchart Gardens in Victoria BC in spring. Never seen anything so magnificent in life. Short ferry ride north.

Enough rambling from me. Thanks for new found friendship and social contact.

Come visit soon.

Hummbird outside on porch. Waiting for a refill in the feeder.

Bye for now.

Your friends.

Dan, Patricia and Andrea Jennings

[LEEJUNFAN in reply to Hidden]

Hi Dan!

Thanks again for taking the time to reply and we appreciate how busy you are.

You're all so thoughtful and you sound a lovely family and thank you so much in considering my request.

Anything we can do and it's in our power then we'll do it for you.

Speak soon my friend and keep on keeping on as they say.

Best of wishes to you, Patricia & Andrea.

Tony & Kim xx

[cgarff]

Hi Dan, I totally want to go to this conference as well. I am so curious about it, and also forwarded the information on to my Neurologist here in Utah. I want to hear what they say and if they are finding any treatments like the possibility of the transcranial MR-guided ultrasound as treatment. I have read that I believe they are trying it on parkinsons patients and it is working, why couldn't it help us? I am so tired of just standing by and waiting. I have participated in two different studies at NIH in MD, in hopes that it might help find answers some day, however that was years ago, and things have changed so much since then. If I am able to go, I would love to meet up with you and your family, would be nice to not be alone. I just want answers!

Cheryl

[Hidden in reply to cgarff]

Cheryl.

My God! It is good to hear from you. You could be a powerful force, voice, presence for yourself, me and all in this group if you could attend. I say my prayers that you could find a way. Your knowledge could bring way more value from what these folks say to our community online than I could.

My brain function is declining and makes it hard to keep up now and understand what is happening.

We would be delighted to meet you and assist in any way we can. My daughter and I booked as patients and conference gave us $50 rate. My wife attends at no charge as my caregiver. Please inquire of them if you go.

Our flights are booked and hotels reserved. We spent many years of life in and outside of Atlanta. We would love to share what we remember of it although we have been in Seattle for ten years now.

Please know you are never alone.

From a friend in Seattle,

Dan

[cgarff in reply to Hidden]

Hey Dan, can you email me? I totally want to go, I would like to understand the conference rate more before I sign up, and where you are staying, is it close to the college? I really want to go and hear what they say, just have to convince my husband. my email is [e-mail]

Cheryl

[Hidden in reply to cgarff]

Going to email now Cheryl.

[englishmumof2]

Awesome! Thanks for including us! I'd just like to know how to stop it getting worse... after my appointment yesterday with Proff Edwards where he's like yes it all 10 problems are the FND and a referral to his psychologist for cbt and talk to mobility people about help that was it! Bless I get the feeling he wishes he had a magic wand! I'm very lucky compared to most people as I have stand alone FND no other co-existing conditions ! But it scares me that I've deteriorated so much in 6 months... where will I be when I see him again in 6 months! On the plus side I've seen a lot of places around London that are very pretty that I would never have seen if not for my trips to St George's 😍

[Hidden in reply to englishmumof2]

englishmumof2.

You tug at my heartstrings today! Of course I will make every effort to get attention to your question.

After all, it is the question we want answered for our personal well being and to give relief to our families.

Magic wands are often discussed in our home. Our extended family grandbabies often let us hold theirs and pretend when we see them.

Please, do not diminish your condition by it being stand alone. We are equally devastated by the complex cascade of symptoms that we experience. My prayer is that it does not evolve and worsen for you. The plate is full! You do not need more.

I identify and have great empathy for your question. I very much want to hear it answered at the conference as a sign of progress.

I only hope to get that chance but do not want to prematurely raise spirits. Hopefully, many patients will be there to ask that question.

We have to pound on the door and yell help. Can only do best.

Had the blessed fortune in life to travel to Great Britain before this disorder struck. What a fantastic land and the people so engaging. It is a memory that makes me happy.

Here in Seattle, our home sits by a school and public recreation park. I can walk thru the park and on clear days see the sheer towering beauty of Mount Rainier. It always looks different and I am always stopped in my tracks to simply have seen it.

The world is a magical place.

My best to you and family. I have your question in hand. Thank you.

Dan

[englishmumof2 in reply to Hidden]

Thanks Dan, I lived in NY for 7 years and I miss it greatly.. in fact that's where my first attack happened that they put down to a possible tia as it was a text book stroke symptoms - the brain damage... 2 years later back in U.K. And another similar attack and after many Drs checked tested me and said they can't find a problem , a lovely lady met me and did tests and said "I guarantee your MRI is clear and if so your got FND.. here's the website, good luck". She was great because at this point I thought I was having some out of body experience and a break down and that I was faking it! Met proff edwards and his team and they reassured me I'm not loosing my mind and I'm not faking it 😍.

I miss the i95 journey up to Boston and the parkways in the fall!! Miss NY , 😂😢😅😭. But my life is here now so c'est la vie 😀

[Hidden in reply to englishmumof2]

You give me yet another chapter of remarkable journeys people take in life and your amazing ability to adapt and cope. Thank you for sharing a glimpse of life that enriches mine. We will chat again...

Keep living life.

Dan

Oh, my trips into the northeast part of the U.S. were spectacular. I too loved travels through NY state and Pennsylvania. Fun to go and do when I was healthy and working.

[Anne_Bonny]

I'd love it if you could ask them if there is any attempt being made to categorise different types of FND. It seems a little weird to me that everyone gets lumped in with the same label and treated all the same rather than trying to categorise FND into sub types by symptoms. I feel like (from a scientific point of view) a meaningful statistical analysis could be done to confirm or deny that they are all the same condition. For instance, is there a group of symptoms that respond well to certain treatments that are not normally considered due to the success rates of the general FND population being so low?

I feel like an in depth characterisation of FND into subtypes could very well help to provide well tailored treatment plans based on your symptoms, progression etc. In my opinion, it is a vital first step in the understanding and treatment of FND that is overlooked. For instance; do those of us who have permanent symptoms differ clinically from those of us who relapse and remit? Could the contrast and comparison of different group help to shed light on what is happening to us?

[Hidden in reply to Anne_Bonny]

Anne_Bonny.

I could not have been given the more perfect first question for this group. You have articulated the distinctions better than I have seen the clinical researchers describe it in seven years of reading their research published online.

There is so much frustration over the labeling. From personal experience, I have been given over ten different names for my condition at one time or another. There has been no attempt to organize my own symptoms for classification into the type of clinical heirarchy you describe. All I hear is "we do not see a lesion in your brain, so it must be this other stuff.". HUH??? I get really disturbed by this as you can see.

I will tell you that I believe your issue is front and center on this disorder. If the group in Atlanta does not have a clear and competent approach to this issue, then I am afraid I will be reporting disappointment back to this community. I am cautiously hopeful.

Lastly, your reference to permanent symptoms is quite relevant as I read a number of posts from where this characteristic prevails. Again, for me it is complicated because I have confirmed systemic "organic" nerve damage in addition to intermittent symptoms. Yet, not one of the two dozen specialists I have seen in this field have ever correlated a link.

The medical community has much work to do before they can truly begin making inroads for consistent and successful treatments.

THEY HAVE TO UNDETSTAND THE PROBLEM FIRST.

Thank you for a great post. I will get this into question form with priority.

Dan

[Hidden in reply to Anne_Bonny]

Anne_Bonny.

A quick follow up post. I did sign up and complete the initial questionnaire on The Scientific Registry at FND.Hope back in January when it came online.

Whether that effort bears fruit in the need for systematic classification and stratification of this disorder in the medium term would I think depend on whether it is linked with information from the diagnosing physicians. Again, it seems to all be in a very early stage of recognition. Probably out of the scope of benefit in my lifetime.

Dan

[NAV4401]

Hi Dan,

I live on the outskirts of Atlanta and hope to go to the conference. I was just officially diagnosed with FND at Emory last Thursday, so I am doing as much reading as I can about what this is. I also hope this conference will give me a better understanding. I hope to see you there. If you have any questions about Atlanta or need help, let me know.

Thanks,

Nancy

[Hidden in reply to NAV4401]

Nancy.

Now family is excited about coming to see a fellow southerner - even if the reason is for medical condition.

Nice to hear from you. We lived in Gwinnett County for years then up into foothills.

Having to come in from Seattle. Thank you for your gracious offer of assistance. We extend same offer to you. Hope our family can meet you at Emory.

Before I forget, after talking with Emory CME office, my daughter Andrea and I enrolled as patients at fee of $50 each. My wife Patricia is attending as my caregiver at no charge since I can not travel without assistance. They are incredibly helpful and caring. I have warned them about my movement disorder so most likely will be at back of room - for my own sake as well as family.

Concerned that you have this diagnosis. It is a start. I find this support community to be first class folks from all over world. They have much knowledge and caring thoughts to share.

Please communicate as you feel up to it. We are here for each other.

Been experiencing symptoms for over 22 years now. Getting a bit old for this but want to come and see if they have any useful insight and to be a presence for others with disorder and their families.

Youngest of two daughters has diagnosis too. That alone breaks my heart so the search for help intensifies.

Always can reach me by email if needed. Disorder can be scary stuff and you want to know you are not alone.

[e-mail]

Hope to see you soon . Take care.

Dan

[NAV4401 in reply to Hidden]

Nice to meet you! I haven't officially signed up yet, I wanted to talk to my team at Emory and find out if I should be enrolled as a patient or what they think I should do. I do plan on being there though. Good to know you are previously from this area. It's beautiful here. I am in Canton, not far from Gwinnett as the crow flies, same northern outskirts of Atlanta. I am sorry your movement disorder is so difficult for you. I believe I have had symptoms for many years and they just thought I was tired or depressed. In 2015 a list of symptoms hit like a ton of bricks! Some have gotten a little better, but many have remained. I took a lot of doctors, time and tests to get to what I was told last Thursday. I'm just happy to get an answer and not be told it's all in my head. None of my issues are severe movement disorders, they are just enough to cause me to stumble, fall, choke, stutter, slur, facial twitch, rapid eye movement in left eye (fun times), occasional spatial disorientation, insomnia, extreme exhaustion 24/7 but can't sleep, brain fog, cognitive/memory issues and the list goes on. I also get the phantom smell with a deja vu sensation, usually followed by migraine, sensitivity to light, and exhaustion that will last sometimes for days. But usually, I can try to hide many of the symptoms, unless I take a total fall in front of everybody. I also try to wear clothes to cover up my bruises from running into doorjambs and falling. I am not in a wheelchair yet, but there are some days when things are so bad, if I did have a wheel chair or a cane I would use it. I hope I don't worsen to that point. I also believe my mother had this. She had many of the symptoms from as far back as I have memory. She went to the Mayo once and they diagnosed CFS, as they understood it in the 80's. Anyway, thank you for your email, I will try and watch for you at the conference. It would be great to meet you all!

Nancy

[Hidden in reply to NAV4401]

Nancy.

Again I thank you for telling your story. There are many connections to symptoms.

Getting to see you at conference would be a pleasure for me, Patricia and Andrea (daughter also with disorder).

I continue to be humbled by the trials of others. We share the trait of laughing at some of the symptoms and trying to keep a positive mindset which I now seem to fail at sometime.

Please keep in communication and post how you are doing and what you come across to helps to mitigate the horrors.

Hope to meet you in Atlanta.

Dan

[cathys20]

Dan, Have you tried botox for the eye and other facial spasms. As I mentioned before my mouth is in constant contracture to the right. They did EMG and diagnosed Hemifacial spasm. Have you had an EMG done, and if so did it show anything, If Not you could request one, if you live in the states as from your post I am assuming you do, you should be able to request this. Also don't know if you are on SSI, but if so your medicare would cover you to go to Mayo for testing for POTS, autonomic neuropathy, and other issues. If you have had an EMG already, and it showed nothing, I am sure you can still have botox done for the contractions. When my eye was completely shut for a long time and mouth to pulled to speak they did botox. I have had botox everywhere for these darn contractions, problem is it doesn't last very long, and it too has its side effects. But when I only had the one eye, and the other was so strained I was having constant migraines I opted for it and it did help so much. Now my eye is open most of the time, but mouth never did improve. I did not know about the conference, I will look into it as well. Where are you in the states? I am in WI, and Atlanta is only a day and 1/2 drive from us. I might look into it. Other problem is with this stomach issue, I can only ride short distances without heaving constantly in the car, my poor hubby. We use to travel for days, this is the pits, but he has gotten quite use to my heaving, wish I could say the same,lol...Have to make light of it all, or it would wear you down. Talk soon, Have a good day I pray, and remember, water is your friend and so is salt...Praying it helps with the weakness. Cathy

[Hidden]

Cathy.

Nice to meet a friend from Wisconsin. We are in Seattle but I grew up in the South. Regarding Botox, I have great concerns because of the widespread axonal nerve damage throughout my body. After 4 EMG tests, docs called it a highly unusual and complex study and then wrote it off as something they did not know. Now too frail to do more invasive tests.

It is OK. Just do not understand why it is migrating so extensively into the same side of face as my optic nerve atrophy. Eye and facial muscles pull in synch.

Do not push yourself for a road trip. I have mixed feelings about what might come from conference. Do want to be a voice for those suffering and importantly the younger ones and families.

This disorder can put so much pressure and uncertainty in life. Need to let medical community see and hear about it

Boy... I used to get so sick on car rides after symptoms began. Now that I had to give up driving, I just try not to watch the motion. Brain can not handle it!

Already warned the conference staff to sit us near back of room because if movement disorder gets rolling, I will disrupt everything going on. I told them even docs afraid of it and I refuse all attempts to send me to ER.

Again, thank you for concern and ideas. We all deal with this as we can.

"Water and Salt"

Dan

[Dave_1]

An investment indeed but one that I hope gives you some answers.

I suppose the biggest question that jumps to mind is this

WHY IS THEIR NO CONTINUITY IN DIAGNOSIS, TREATMENT OR SEARCH FOR A CAUSE. This condition is much more than reaction to a mental/psychological condition.

Take care and stay positive.

[Hidden in reply to Dave_1]

Dave_1.

Please allow me to include your question for presentation with other questions being submitted. It is done anonymously in "white paper" form and will be made available to all at the upcoming conference if so permitted.

It is an excellent concise question that I hope someone of a lead investigatory role will take time to answer.

Two points stand out for me in your post:

The word "continuity" can not be overstated. I find the practice of Neurology in the U.S. to be absent any standards of continuity in the areas you addressed for this disorder. Without discovering evidence of emerging continuity from provider presentations, I will have wasted a lot of money going to Atlanta. It's that simple.

My second point:

If permitted by you, I will take your second comment regarding "mental / psychological condition" and turn that into a second question. The disorder HAS to be much more (as you stated) than a reaction...

Again, if I am unable to draw provider attention to the essence of this question, then disappointment in their progress on cause and effect assessments will probably turn into outright anger.

I believe we are at a pivot point between provider willingness to engage with patients and patient frustration with uncoordinated action as defined by your comments.

I approach the event with great caution and only some optimism based on my personal experiences.

But I am curious. Very curious indeed.

Dan Jennings

Seattle,. WA

[Dave_1 in reply to Hidden]

Of course you may use my comment in any way you see fit. I live in the United Kingdom and the Health Service is in crisis in any case so being specific NEEDS to be a priority and less of the "what came first, the chicken or the egg"

Will keep an eye open for your update after it's all over.

Cheers

[Hidden in reply to Dave_1]

Dave_1

Thanks for being direct. I think we now have to be blunt to get something moving. Will try and report back.

Dan

[Dave_1 in reply to Hidden]

Thanks Houseman, all of us who suffer and it is the best way to describe this condition do need to talk about it, not only to the Medics but to Friends and Acquaintances, just to bring awareness of the high incidence level that to the best of my knowledge is not recorded as a statistic as it cannot be "pigeon holed".

For example, I heard through the grapevine a few months ago that my local Neurology ward had a bed count percentage of 50% with Functional Disorders. Surely a cause for concern in anyone's eyes.

Sorry if I seem a little blunt but I believe that if we ramble or are not precise in our questions we sure as heck will not get a straight answer.

You take care and I appreciate your efforts to encourage those of influence to focus on our needs and those who will undoubtedly will come behind us.

[Hidden]

So well said. Here, Here! Your comments hit bullseye. I am only a fellow sufferer who at age 61 finally succumbed to the ravages of chronicity of this stuff and lost work and driving license. But with my youngest daughter developing symptoms as young adult and derailing so many life plans, I gotta go face these folks as I got nowhere with my multitude of doctors and self serving insurance plan.

Out of both time and patience for anymore run around.

Take care. Enjoyed conversation.

Dan

[kjkla85]

I'm really pleased that you are going along to this and look forward to hearing any insights you have to share.Best wishes for you and yours

[Hidden in reply to kjkla85]

Kjkla85.

Many thanks to you for your support. I will strive to understand, what, if anything, is being undertaken in a coordinated manner to address the concerns and health needs of those of us with this diagnosis

I have started receiving questions from our community which I hope to be allowed to make available at the conference for consideration.

This is a very emotional journey because of our own family circumstances but also because of the new found personal connection felt with all of you.

I feel so welcome here. I am swept away by the experiences you all have shared about your life with this disorder and burdened by the pain and suffering felt. It is all too familiar to me. I have also learned much from you.

It gets me focused and determined to engage the system. As a native of the southeastern part of the U.S., I was brought up with manners and respect for others. However, we are also taught an intolerable stubbornness which flares up when things are just not right.

The situation with how people are not getting proper help, treatment and answers for why this disorder occurs is " just not right."

I am only a conduit at this stage to share your questions and concerns. I might get put in "time out" down there in Atlanta. It will not be a first for me.

Keep hope for them to listen and engage. Doctors do not practice this skill very well. But the problem here is great big... So we try.

I will report back to this community and give you what I can. Do not expect too much. I am curious but cautious.

Take care of yourself and family. We do matter a whole bunch.

Dan

Seattle, WA