Functional Neurological Disorder - FND Hope

Morning. My wife found this one...

To all my community friends.

Late starting today. Many posts to read and replies to make.

But first,

Last night as I sat comatose on the sofa, Tricia was surfing the "streaming channels" we get from the Roku box that substitutes for cable / satellite TV we can not afford.

She came across a whole channel devoted to CBT - cognitive behavioral therapy. It seemed to have many episode choices to select for viewing. We had no idea such existed.

You all may have already known this to be. So, if I am from the dark ages just laugh it off as being the funny thought for the day. I never watch TV except for " Midsomer Murders. "

Next thing you know, I will get the book titled " Medically Unexplained Symptoms for Dummies" in the mail.

Love to all.

Dan / Seattle - two days in a row with a peek of sunshine.

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It's the new fashion. EVERYONE who's ANYONE is doing it. Order now! Operators are standing by!

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Nurmi.

I was not making fun but you are hilarious. Happy day.

Dan / Seattle

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Imma allus makin' fun. Only thing keeps me vertical.

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But in truth, it IS the current fad that they are determined to foist on everyone for everything. Whether it's appropriate or not. One size does NOT fit all. Neither in treatment nor in pantyhose. Just sayin'...

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The stats are that CBT works for 13% of people with FND. You could argue that those may have other issues. Has this data been really analysed in relation to FND? Also lots of people have 'issues' I don't think anyone goes through life without anything traumatic or upsetting happening but does that make you mentally ill or in need of a therapist? Then what about all the people who do go through psychological events who don't develop FND? But I'm not saying CBT is bad. If it works for you go for it but I think it needs to be included in physical therapy.

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Hi I am currently taking part in trials to see if CBT is effective in reducing or stopping seizures ! It is being trailed at a university in Edinburgh.

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Good luck let us know how you get on. Fortunately thats one I don't have.

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If you did not have issues before a brain injury you will navigating the medical system. DBT is a version of the CBT and the psychologists who get our cases when our brain looks organically normal don't know what else to do.

Within 6 months after my brain tumor surgery and the psychologists I was sent to for my non-epileptic seizures - because they could not explain them- put me into a DBT therapy program. Fast forward I almost die from adrenal failure and crisis and they say to me - but your pituitary gland looked normal. Sorry guess you did not need that -but it didn't hurt you to have it -(DBT) Yes it did. It made me doubt me - Kept me out of the right building I was supposed to be in Neurology NOT psychology.

All I could say about the therapy for me was I learned how to to do mindfulness, which still helps me with pain and my blood pressure.

Don't stop looking! They don't have much else for most of us. I needed physical therapy, speech therapy, and Occupational Therapy. and of course, I am now on cortisol which controls my seizures. Happy to say all of that helped me. I walk better, I have safeguards around my house for memory issues and I can form a complete sentence again.

The idea is that the emotional part of the brain will jump to the amygdala and cause movements so the DBT /CBT is supposed to help calm it down.

Pretty hard to do when doctors don't take you seriously. there are 7,000 rare diseases out there. Pretty hard for the average doctor have access to the right labs and outside of teaching hospitals.

So again I will ask all of you - please sign up for the Scientific Registry we need us to be united and get the answers we need instead of waiting on them!

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I just got my coffee and so wanted to say good morning Seaotter2020. Looks like an active day.

Here's to you. Thank you for being you. Thank you for being here with us.

Dan / Seattle

I am on the registry.

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Yeah! Thankyou!! We need answers now!

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Hi Amallia,

Coming in as one that is going through CBT.. I have two ways of looking at it. CBT can help us if we do have a traumatic background, and not. Really this disorder is traumatizing in itself, and CBT can help us to talk through the feelings, emotions, frustrations that this brings. I have found it to be helpful in some ways, but I am still having issues. But it has helped me to get through others. Do I think that it is the cure all for this. No. And I know that most doctors would agree, however I have a great Neurologist who actually agrees with this. She doesn't believe this is all in our head, and that therapy is the cure all. She feels that there is something else inside that docs are not finding, and she is determined to keep looking. Thank goodness.

I do agree, that CBT, Physical therapy, speech therapy if needed, and any other therapy that is offered can help us out depending on the symptoms we are having etc..

Cheryl

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Hey Dan, that's news to me. I would like to see if I have access to that channel. What is it called? Or channel number? I would like to see that.

Glad you have had a few good days.

Hugs to all

Cheryl

Oh.. Does Andrea have a FB page? text me.

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Cheryl.

Been missing our chats. Love to read your thoughtful posts. Thank you for being here.

Tricia left for work. Andrea does have FB page. I will get info you requested and send it by email tonight if OK. Or, may ask Tricia to send direct to you by email if OK. Be on look out please.

Good to hear from you. Take care of yourself.

Dan / Seattle

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Tonight is great. :0)

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I'm in the uk and trained as a Heath professional here but worked overseas for many years. I'm shocked at the limitations budgetary I'm sure, that occur e.g. I had a chest X-ray recently and standard is AP lateral chest X-ray so you get a front to back view and side view. All you get now is AP front view, so I had missed pneumonia. I am unable to work but the limitations would drive me crazy as I don't know how anyone gets diagnosed when they are reluctant to even draw blood. I agree that having this and being sane could drive you insane. I'm fighting back now. If you don't know what you are taking about and don't have empirical data to back up your diagnosis, get out of my way and get me someone who can help. Medical practice is suppose to be 'evidence based' there is little out there to suggest that psychological treatments work and also physical treatments work although we know from individuals what works for them and there are too many variables with each individual for real results yet. The government needs to put funding into this area. Getting people back to work helps the economy never mind the welfare of the individual. I for one am not ready to retire and sit watching tv all day on those days when I have enough energy to be awake all day. I'm trying baby steps in areas I used to enjoy say researching or writing. I might have a bad foggy day where I can't move or think but iv been doing a little bit at a time and I find if you had a hobby or have something you have always wanted to do within your limitations to try to do it step by step. I'm now starting to have ideas when my brain had been melting for 3 years. Unfortunately I had a really good one today but forgot it by the time I got home. Hopefully it will come back. For me I just can't accept something that is so unknown. I like answers and solving problems. I'm a let's sort this issue out and move on person, so this has been hard for me but I'm getting from the this is the end of my life thinking to this is going to get fixed some how. Maybe I'm living in dreamland 🤔

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Amallia.

Terrific writing.

Thank you from heart.

No you are not living in dreamland. You are leading.

Thank you.

So much knowledge and so much courage.

I keep writing letters. Look over here researchers!

We are not done and never will be until people get answers.

Much love to you.

Dan / Seattle

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