Another Way Around This...

To all my community friends.

There have been exhausting discussions about the concept of brain signalling malfunction in FND without demonstrated evidence of any concurrent tissue damage being the cause of that malfunction.

I would like you all to consider and openly debate the pros and cons of putting this issue in a different context to allow us as sufferers to move forward in our search for quality care and life sustaining benefits.

My proposal:

I submit to you that some degree of tissue damage had to occur to cause a signal malfunction. However infinitesimally small, something was damaged in the process.

While I am not an advocate of signal malfunction as an explanation for FND, I do realize we are butting heads with a profession that buys into this theory overall.

So I offer this to you.

If the medical profession insists on operating off of this theory, then it should have to explain how signal malfunction can occur without any trace of tissue damage and give scientific proof. This would be required to validate FND as a diagnosis possibility.

OR

It should have to perform whatever molecular studies are necessary to confirm that tissue damage did in fact cause signal malfunction BEFORE it can render a diagnosis of FND on a patient. This step should be retroactively applied for all patients who already have the diagnosis.

If we, as a community, put this out in the form of a petition to FND.hope and any other supporting organizations, and if it became accepted consensus, I think you might find many of us could get released from this diagnosis and be reclassified to more medical investigation required status.

I want out of this crack in the road. It is not helping at all. It is very damaging.

You can't keep giving something a name without a scientific reason for why you give it.

Otherwise, sooner or later it will stick...

I have too many shades of lipstick on me now!

No hard feelings if you reject the idea. I have been laughed off the planet before for how I think about things. We would just go on to the next idea . Pressure breeds innovation.

Your input is requested. The USA is a great guinea pig for this as we have absolutely no idea what we are doing with this disease - other than actually finding out it is something else entirely later on.

My best. Good night. May God Bless.

Dan / Seattle

[Hidden]

Sign me up.

I think it's a wonderful idea. Might be some snags with funding, lack of care in some areas but I agree they should have to prove not give us 'illness' as I'm now calling it and leave us for 40 years.

I'm meeting with Jon Stone sometime in the next few weeks and am going to be bringing up lots of issues.

I was in hospital recently with a painful abdomen and blockage and told there was nothing wrong with me and when mentioned I have a history of ovarian cysts, very painful, get them all the time and can feel them 'pop' and told them you should be aware of this as you did the ultrasound 15 years before that found this, I was told - no we keep records for 6 years!!!

I mean what?! I can't believe the NHS doesn't keep your complete medical history.

A complete history means current, past, and family.

Iv also never been asked about my past or family history.

After the blockage when I saw my gp because docs in hospital didn't care about blockage I told my gp there's a strong history of bowel cancer in my family.

He wrote something on a piece of paper and that was that.

When I did diagnosing I sometimes sat with 6 or 7 big buff files of patient notes going through everything from nurse and docs notes to haematology, biochemistry, and past and present history.

As someone once said-

The truth is out there 😐

[Hidden in reply to Hidden]

Amallia.

Thank you.

I agree pitfalls lie every where.

Frustration with bad information just got to me today.

Your horror stories continue.

How can medical records only go back six years? Story for another day.

X-files = truth is out there at least on TV.

Night.

Dan / Seattle

[patti86]

Im in...I totally agree......especially since I do have commnets in my brain MRI thats state "minor foci of increased T2 signal within the superatentorial white mater. No lesions seen. These findings are non specific, differential diagnosis would include small vessel infraction, gliosis, or focal demyelination"....however in my case the neurologist said it meant nothing and i have FND. oh my.

So in simple terms.

small vessel infractions means = a possible small vessel infarct (SVI) or “lacunar” stroke. hmm sound familiar? lol

Gliosis means = a nonspecific reactive change of glial cells in response to damage to the central nervous system (CNS). hmm..oh wait I did not have permanent damage, its just the signal right?

Focal demyelination means = any disease of the nervous system in which the myelin sheath of neurons is damaged. This damage impairs the conduction of signals in the affected nerves...hmm this fits too...but instead, i have FND or more specifically functional gait disorder. since he said all the other systemic issues I have are separate from the Functional "gait"

..So absolutely. sign me up Dan.

[Hidden in reply to patti86]

Arghh. Instead of you do not have FND you have the above he's twisted your organic findings.

I also had a small infarct which everyone ignored and was diagnosed in Australia but couldn't convince a neuro here to give me an Mri and even GPs know what demyelination is.

[patti86 in reply to Hidden]

I know huh...My friend an SLP, said when this all started, Before even seeing the first neurologist. I think I have him labeled as #2..but I guess I should switch that to #1.Oh well Ill blame it on my brain miss signaling. seems to be a trend. lol Anyway, she thought i had a minor "silent" stroke. she pulled me aside one day, since she had not seen me in a while and came right out and asked..." are you okay. Did you have a stroke"? I said no. Then she presented to explain why....so I said that I would send my primary a message...which I did and she was the one who ordered the first MRI.

[Hidden]

Thank the world for friends. I saw my best friend 2 weeks ago who unfortunately is on the other side of the world and she asked me what has happened to your neck? I had just had the scans the day before but hadn't told her.

She said you neck is sticking out more. It looks different. She is right because my discs are bulging and pushing the bones in or disintegrating down my whole spine but my neck is only 15mm inwards from when she last saw me. I think she must be psychic 😊❤️

And a small infarct is a stroke and I can't believe mine just got ignored. Can't use money for expensive diagnostic equipment must be week one of med school now

🤗🤗🤗