FND CONFERENCE - anonymous question submission

Hello to all friends of this community.

On Thursday morning, my family and I will depart Seattle for Atlanta for the FND conference starting Friday at Emory University.

As many of you know, I have been collecting questions from this community to hopefully make available to conference attendees. All questions will be submitted in writing anonymously on white paper. I hope that people will be allowed to pick up these questions and see some of what is on our minds regarding FND.

I will gladly bring back any responses, written or oral, and post any information I get back on this site. I really have no idea about doing this, but the optimist in me says to try and see if the medical world is serious about addressing our concerns.

A Game of Twenty Questions:

Actually, I have twenty-one so far and it is no game. I would love to have more if you have them, but need them by Wednesday noon Seattle time so I can get them on paper and copies made. After that time, post them anyway and I will at least try to ask them verbally.

Not a Game at All...

This is very serious for all of us. It is emotional for our family as I have struggled for over two decades with symptoms, one daughter has had this for over eight years and my wife has borne the brunt of this as caregiver. We have been ridiculed, ignored, disregarded and failed by medicine. I am fed up.

Questions so far:

Not in any particular order. All of equal importance. Annotated to save time and space. Critique and add to!

1. How do I keep from getting worse?

2. Any attempt being made to categorize types of FND?

(Four sub questions included in this one)

3. Any diagnostic tools (MRI) for making positive diagnosis?

4. Any specific treatments other than CBT and physio?

5. Why are we left without care to worry about "unknown?"

6. Any evidence of genetic predisposition / linkage?

7. Why no continuity in diagnosis, treatment or cause?

8. Any doctors of family member of doctors with FND?

9. If in my head, why was I not cured when told that?

10. Will I ever get my life back?

11. Is the name FND the reason I get no help / treatment?

12. Is there anyone who knows more about FND than I do?

13. Will anyone listen instead of treating us like psych case?

14. What to do when have both FND and organic disease?

15. Why doesn't Neurology have protocols for FND?

16. If anti-seizure meds help, why not find out why?

17. Is it acceptable to be told to "Google" to find doctor?

18. How on earth do I reassure my family about FND?

19. Why is there not a better name for this disorder?

20. Is Neurologic Deficit Disorder a possible better name?

21. Is Abnormal Physiologic Disorder a better name?

Again, much more detail provided in many of above.

Thanks again for contributing. You are a great big reason for us going. Way too much suffering and lack of care happening.

We do what we can and report back. Not real optimistic but hoping for a positive surprise. If nothing else, I just want to find one provider or one researcher and tell them I think the lack of progress, inadequate care anb insensitivity to patient family needs

[Hidden]

Continue post...

The last sentence got cut off. It was supposed to end up with the phrase " is ridiculous."

Oh. I am not a moderator in spite of stupid tag.

But if you need me, can always email at:

jenningsdaniel3326 @gmail.com

Thanks all. Take care. Rest and sleep.

Dan / Seattle

[englishmumof2 in reply to Hidden]

Awesome Dan! Wishing you and your family the best!

Louisa

[Hidden in reply to englishmumof2]

Always appreciate you Louisa . Always.

Take care of family and most of all you.

Dan / Seattle

[Ailsaw in reply to Hidden]

Good luck and the length of time it takes to get a diagnosis is disgusting and how can it be common when doctors and consultants at the hospital have never heard of it , it may be a common condition in the world of neurology but certainly not in the world of ordinary people. X

[Hidden in reply to Ailsaw]

Ailsaw.

Two more questions! Thank you.

Why does it take so long to get a diagnosis?

How can it be a common condition when so many medical people have never heard of it?

Excellent. On the white paper they go!

I think medicine is painting itself in a corner here. Neurology does not know what to do with what they created.

I am a very ordinary person. Heck, all I wanted to do 23 years ago was play outside in the yard and take Patricia to dinner.

Since then, I have been fighting to stay upright and trying not to get railroaded by the medical community. I lost both battles. No regrets. All about facing them now and asking what exactly are they are doing?

You make a great anchor in reality for this community.

Hope to report back something useful.

Take care. I feel better just knowing you with us.

Dan / Seattle

[Seaotter2020 Volunteer FND Hope in reply to Hidden]

Jenny / Daniel.. not sure who put you on as moderator but I can ask Bridget to take you off if you want!

[Hidden in reply to Seaotter2020]

Seaotter2020.

Thanks for responding.

Was asked if I wanted to be moderator. Explicitly replied that I did not on same day.

Next day, the tag was there.

By the Grace of God, if you can get it removed, please do so. I am a patient, not a moderator.

Thank you Seaotter2020.

Dan / Seattle

[Seaotter2020 Volunteer FND Hope in reply to Hidden]

Eek eek

[Seaotter2020 Volunteer FND Hope in reply to Seaotter2020]

By the way Dan we are all patients with lots of patience losing our sanity sometimes..

I know what happened now. She was following one of my threads wrong person.

[Hidden in reply to Seaotter2020]

Seaotter2020.

What is patience? What is sanity? All I got left is love for people and a sense of humor.

You take care.

Dan / Seattle

[Seaotter2020 Volunteer FND Hope in reply to Hidden]

Cyber hug!

[Seaotter2020 Volunteer FND Hope in reply to Hidden]

Done . Off

[Hidden]

Hi houseman, I think your list is great, but like many other sufferers it's so hard to think what to ask or say, one lady wrote today on this website why are we just left in pain or agony to just keep getting told it's caused by stress and anxiety. Very few Drs can actually see the agony we are in when in seizure, trying to walk, trying to just have a bit of life. When in seizure I can hear what is being said to my partner, example, I'm having a panic attack, I've took an overdose and tried to commit suicide, I've lied about side effects from all the drugs I've been given. These remarks have stayed with me and I remember them being said although a lot of past 2 years has gone. This is so wrong to be treated like this, my dogs are treated better then me at the vets. When in so much pain in the past I know I asked my partner to help me die then live in the constant pain. This illness is soul destroying for all. And still just left waiting for help from someone. 😭😭

[Hidden in reply to Hidden]

Lisa-anne.

To use an old southern expression:. " I luv ya darlin' "

I know it may not help, but I luv ya anyway!

Sometimes, we can't get backed up against the wall any further than we already are.

Keep hollerin!

I will phrase the question this way for the white paper:

Why do you watch me suffer? Why?

Thank you. Sending all the light I can find your way. I care.

Dan / Seattle

[Hidden in reply to Hidden]

Thank you dan/houseman. I care too. 😊😊🤗🤗

[Ailsaw in reply to Hidden]

Paramedics thought I was just a drunk and actually bruised the back of my hand trying to get a response , little did they realise I could still hear and feel pain , that experience will stay with me forever , our condition needs to be publicised and the medical professions need to wake up and get some reality on it . X

[Hidden in reply to Ailsaw]

Ailsaw.

What a horror. They all revert back to instincts when they see this stuff. Never realizing that they can do damage to us when we are incapacitated. The worst is you and I re-live it.

In a moment of vulnerability here, I am just a short time member of this community, but I have not seen any posts from medical people. I do not mean giving out advice, but just posting acknowledgement of our existence.

I guess I expect much of the world. Please do not think I can bring about reality in Atlanta. I just want to see if there is any awareness at all and give folks a glimpse at the incredible depth of thought, discussion and searching for help that is taking place everyday in our community. Will one person in Atlanta even acknowledge us? I truly do not know. Not at all.

Really buried but determined not to let anyone down.

Buck up Dan! I will deliver these questions and stand tall amongst the shadows to challenge what is not right. It is the only route to follow.

Such a gift you are my friend. Thanks for stirring the soul.

Dan / Seattle

[Kadaffy]

It looks like you have a great set of questions..Only one more I can add..

Are there currently any experimental tests being done using new neuro-imaging techniques such as fMRI's.Spect scans or Quantitative EEG's to discover possible reasons for this condition?

I underwent Qeeg neurotherapy where they discovered increased Alpha activity in my brain.When these were slowed to more beta activity the movement disorder decreased significantly..( although it caused adverse reactions).

Thank you, I look forward to hearing the responses to your questions at a later date.

Shawn Mahaffy ( an 18 year sufferer)

[Hidden]

Kadaffy.

Morning Shawn.

Eighteen puts you around the track a whole lot.

So this is great question too. I will incorporate it verbatim.

I read that you have movement disorders. Same here. Mine is complex (many types together) and can be violent.

Because I am a believer that this is whole body problem (including alterations to brain), I advocate Neuro imaging.

In USA, seems hard to access more advanced scanning technology.

Believe 18FDG-PET could be useful, certainly SPECT because of its unique characteristics, MR neurography because of pain / inflammation particularly with sciatic nerve, but others as well e.g. vagus.

Cgarff wrote a bit about fMRi if I remember so with your input and research uses, seems valuable tool. I need more reading.

Q EEG is new to me but anxious to read up as you have brought it to attention.

To sum it up, would seem a gap between what is out there that could be useful and what patients can actually get access to via their doctors. Probably cost and FND not their priority?

Again, I will put it on paper, and hope somebody will comment on it in Atlanta.

I will say this. I think the whole diagnostic approach has to shift towards molecular investigation in conjunction with Neuro imaging if we are to expect any progress to come our way.

Thanks a bunch. Valuable insight and addition. Take care and keep us posted on how you are doing.

Dan / Seattle

Oh. No, I am not a moderator. Ignore tag.

[Seaotter2020 Volunteer FND Hope]

Hello All. I am very excited to see these questions! Bridget Mildon will speaking on Patient Advocacy on behalf of FND Hope at the Emory Conference. We are putting together some questions for her to ask doctors and videotape their answers to share on the FNDhope.org website. If you would like for us to include these questions I would be happy to forward to Bridget.

Also we would highly recommend/ plead /ask/ suggest...that anyone with afflicted with FND please sign up for the first of its kind Scientific Registry. We have some researchers already wanting to study us but we do not have enough people yet. I feel that it is hard to complain about lack of research when we don't contribute to it. The privacy settings you set are completely up to you. You will however see in percentages how many people have the same symptoms like yourself... so for example.. I have difficulty sleeping 70% said yes 30% said no. We teamed up with the Genetic Alliance to do this research so that it would fit medical research parameters and make us more apealable to researchers.

Thank you Healthunlocked fellow members. Our voice is getting louder!!!

[Hidden in reply to Seaotter2020]

Seaotter2020.

I read your post with pleasant surprise. I had no prior knowledge of what you said will be happening with Q&A at conference.

The questions posted last night have increased in number throughout today.

Again, all I have promised community friends is that I will print them out in their original form, which is more detailed and make as many copies as I can carry on plane from Seattle.

The questions are listed anonymously, in no particular order or subject matter and will be printed on plain white paper.

I have no idea if the conference will allow participants to pick up a copy. They will be available to anyone to see what is on our minds.

If anyone has answers or comments about the questions to share, I have offered to collect those and report back to the community via posting.

At last count, questions totaled in the mid 30s in number.

Please advise what you would like from me, if anything, as I am only a patient.

No comment in regards to the registry as this has been first feedback I have seen. I am registered.

Not a moderator as tagged.

Dan / Seattle

[Seaotter2020 Volunteer FND Hope in reply to Hidden]

Dan, will get you removed as moderator so sorry. Bridget was probably double tasking...

Yes Bridget spoke last year as well. For some reason she is not listed this year on the advance notice. These questions will be asked of different doctors , not sure we can get them all asked , obviously. But will try. Since she is representing 5 Facebook pages and this Health Unlocked forum it would behoove you two to meet. I should have requested questions from The Healthunlocked community as well. So sorry for my oversite.

Lauren

[Hidden in reply to Seaotter2020]

Lauren.

I get the questions handed over as soon as I can find Bridget down there.

Sorry for being behind tech times...

Dan

[Seaotter2020 Volunteer FND Hope in reply to Hidden]

Dan. No need to apologize! Not everyone likes Facebook! I had a hard time reading other people's perfect lives when mine had stopped.

Glad we found this group!

[Hidden in reply to Seaotter2020]

Lauren.

You the best. I love this group. Only contact I have with outside world. Many great people here. I hope that we get ourselves out of this mess. Do not want to be perfect but sure do want us all better.

Thank you friend Lauren

Dan / Seattle

[Seaotter2020 Volunteer FND Hope in reply to Hidden]

❤💖👩‍❤️‍👩💑🌞

[FND_ Partner Administrator FND Hope Australia FND Hope UK Group Admin FND International Volunteer FND Hope]

Hi Dan, International FND awareness day is April 13th. This is the 5th year we have been spreading awareness! I just wanted to let you all know that we will be seeking answers to the questions you all came up with.

[Hidden]

FND_

Thank you for the message. The search for answers is well underway. Fortunately, the list of questions keeps growing. I hope your awareness day is a great success for you. Our awareness as a community of sufferers is great too.

Blessings to all. May our community have a better day.

Dan Jennings / Seattle

[Seaotter2020 Volunteer FND Hope in reply to Hidden]

Please send updated questions if you can..

[Hidden in reply to Seaotter2020]

Seaotter2020.

Not sure what refer to. Updated list was taken to Emory conference. I think Bridget has that.

Did not continue to compile after conference although site has been awash in new questions through postings ever since.

Sorry I could not help more. Focus has been on letters of inquiry to institutions.

Take care.

Dan / Seattle

[Seaotter2020 Volunteer FND Hope]

Just to let you all know . We have scheduled doctors from around the world to answer your questions. Go to fndhope.org/fnd-awareness-d... and look for your country or choose by time zone. First 95 can ask questions. If you miss hope to be able to repost. Australian doctor Alex Lehn today at 4pm. Pacific time. 10 am Brisbane time. Midnight London.

[Hidden in reply to Seaotter2020]

Seaotter2020.

Fabulous effort. I sincerely pray that many will take this opportunity to participate in your scheduled event. I hope it will bring enlightenment and relief.

Thank you for such hard work.

Best wishes on turnout and positive interaction. I know the feedback will produce progress in your search for help.

With highest respect.

Dan / Seattle

[nurmihusa in reply to Seaotter2020]

Sadly, think I have more answers than questions for the "experts". I certainly know far more about the condition than any of the medical folk I've dealt with personally. And in particular, how it affects me and what works or doesn't work for me. That ain't right, but that's the state of the world at the moment.

I signed up with the scientific registry and filled out the questionnaire, btw.

[Seaotter2020 Volunteer FND Hope in reply to nurmihusa]

Thank you we need real answers