Home field advantage ...maybe?

Community Friends.

Continuing efforts with all channels open for two way communications to find those who might help us.

I am often haunted by the possibility that answers may lie right outside the doorstep and I just overlook the obvious.

Today, I found the Benaroya Research Institute which is affiliated with Virginia Mason Medical here in Seattle.

They are conducting research in such areas as autoimmune disease, MS, asthma, allergies, arthritis, Lupus, etc. They also have a neurological division.

One area of progress is in proteins modified by stressors such as viral infections that then react to trigger autoimmunity onset. They are expanding this research into protein modification.

I will pull out pencil and paper and once again make inquiry into how their findings might overlap into our disease symptoms or to determine their awareness level of FND.

I am still searching ways to identify others with this diagnosis or symptom onset in the Western Washington area.

We keep trying every day to discover truth.

Thanks to you all. Our awareness continues with each breath.

Dan / Seattle

5 Replies

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  • One follow up to my post above.

    This afternoon, a potential ally to further our communication efforts outside of this community was found.

    I will await further confirmation of the outlet to share our community voice before disclosing more detail.

    It will only be a very small step if it happens. But it may be a step.

    People do listen. The process of change continues. We take what we can get.

    Love and support to all.

    I pray for a positive outcome for all parties of interest. The suffering has to stop.

    Dan / Seattle

  • Dan in Seattle. You continue to amaze me with the apparently tenuous but often significant links you find to research that is happening or has happened out there. This new link to autoimmune issues is an interesting one, because I have a feeling that this could be a factor for a number of people in our community. It would be very interesting to find out percentages, both for the number of FND people who have autoimmune issues, and for the number of people with autoimmune issues who have FND.

    To get that last figure, one would have to delve into the autoimmune world, where one might suspect that people with RA, Lupus, and a host of other autoimmune issues may 'qualify' for a diagnosis of FND on the basis of their symptoms, but have actually been diagnosed more correctly and have never heard of FND. That could kind of skew the figures, perhaps?

    Keep up the good work, Dan. There are a number of people around the world who have FND and who are involved in research of one kind or another. Have you been able to catch up with some of them yet?

  • Vivienne.

    I have not yet. I keep trying to find pieces of puzzle which is sooo complicated for me.

    I appreciate your wisdom Vivienne. Found matrix enzyme activity today in of all things an article on PTSD and doxycycline. What caught my eye was that over activity of them is known to be involved in immune disease and cancer. Why no one tell us?

    They need to make the print font larger in these writings.

    Do need help. Blood pressure fell well into hypotension again today after trying to walk dog around block. Chronic issue. Becoming so weak after, not functioning.

    Much love to you across world.

    Dan / Seattle

  • I am fascinated by your findings. I too think there may be an autoimmune side to fnd which is yet to be discovered. After all, autoimmune disease is now known to be behind all sorts of disorders. I also think that there may well be several subsets of fnd which may in time turn out to be their own disorder. Good luck with your search. If you ever want me to read papers, send me the links.

  • Bluecat99

    Thanks for very thoughtful feedback. I find your comment on the likelihood of subsets that result in unique disorders to be most logical.

    I ask a layman's question each time that I read scientific findings:

    is there genetic vulnerability in individuals that maybe don't directly cause the pathology through defective instructions, but rather establish conditional parameters under which physiologic stress facilitates the development of the abnormalities?

    Each day I wake up I come face to face with my daughter who has remarkable similarities to me in FND presentation and progression. She carries the burden of diagnosis and has also been told by neuro psychology that her illness has no psychological cause and must be organic.

    I know " de novo" mutations can occur in families, but I find it difficult to argue that adult onset unexplained symptoms occur in successive generations from a specific gene defect. It just seems more likely that the genes I carry installed conditions under which given physiologic events may trigger abnormalities like the protein modifications now being linked to Autoimmune disease.

    I may be splitting hairs about it, but it makes a difference in whether I emphasize point mutation genetic search or whether i look directly at the lab studying protein modifications, enzyme activity, etc. for clues.

    Regarding your offer to read research, you just became the executive scientist of the group. It is all over my head. I go looking for links to words, phrases or just trying to see who is out there and what are they doing. So much is found by accident.

    I know we will be sharing more information.

    Thank you again. After spending yet another day in the dark ages of my healthcare provider's version of the ER, it is such a pleasure to hear intellectual thoughts from you.

    Dan / Seattle

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