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Functional Neurological Disorder (FND); Anyone have FND?
I was originally diagnosed with Parkinson's Disease nine years ago. The first neurologists I saw said that, based on my symptoms, they were quite certain I had PD. When I finally had a DaTscan done at the VA and it came out negative, they pretty much told me to "get lost." After that, while not improving: severe tremors (hands and feet), slow shuffling gait, trouble talking and swallowing, blurred vision, and other Parkinson's symptoms. For the next 4-5 years, I went from neuologists to mental health clinicians and back, often being told my problem was "all in my head." Finally, about a year ago, one of the chief neurologists at Stanford University diagnosed my with having Functional Neurological Disorder. My brain sends incorrect messages to my body, and my symptoms will worsen whenever I get stressed. The S.F. VA is currently researching FND, but the earliest appointment I could get with them is more than a year from now.
Does anybody else have this diagnosis, and how are you handling it?
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Hi,
So sorry to hear that. Had the specialist confirm there’s absolutely no way to make this condition better for you? Often there’s no full treatment to permanently treat neurological conditions, that is what many of us here had unfortunately understood after encountering it.
Cheers,
Louis
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1 Reaction@cheyne
I pray you find help and answers.
Myself I'm very skeptical about getting relief and answers for all that going on with mine. I don't think my neurologist is committed to really helping, I think she's just handing me off to another group of therapists. Mosaic isn't the best place for receiving help, and I can't afford Mayo.
You hang in there and I pray better days are coming for you
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I have two places to recommend
Re-active PT, Specialize in FND treatment they are in California, but they have online courses
Also the Association for the Treatment of Neuroplastic symptoms , Symptomatic.me,
Many resources
David Clarke,MD, Howard Schubiner, MD,
There’s a lot to find on YouTube just even putting these names in
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1 ReactionI'll check YouTube and see what I can find and the other 2 authors.
@galere
Hi,
My main focus has been to get the diagnosis that AI and myself had determined. Despite being told not to listen to AI, realistically AI does give me answers to my questions when I ask and does not shrug it's shoulders in bewilderment, as the medical crowd does. Interestingly when I got the confirmation it was almost word for word what AI had been saying.
Everybody keeps banging on about my upbringing. As I age I have moved on and give it little thought. What I don't get is why 60 years on it should now be biting me in the butt. Seems a little late to the party to me. I have noticed occasions when I wake in the morning and feel like the brain is still asleep and needs time to catch up to the physical body. I suspect this may also be FND playing silly games with me.
I don't expect an answer in how to deal with this and am sceptical of any treatment that may be offered. I normally once diagnosed will deal with whatever is thrown up at me each day and try to move foreward. The days I can't I have the luxury of being able to wait it out. Interesting FND intensified around the time in had 15 TIA's over three days. Since then the symptoms have lessend although still present. This adds weight that I don't think it is historical events destablising the brain.
I guess it feels like a computer that has a bug in the program and I need to find a work around patch.
Cheers
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1 Reaction@cheyne
I don't think I'll get answers or treatment that helps. AI helped with my finds on FND Band Hyperventilating syndrome. I talked to my neurologist and she has a referral to mayo but I can't go
Good luck, I pray you find peace and help also
Hi,
Today's revelation, FND is purely the failing of the brain signalling what is required. While the Autonomic polyneuropathy pertains to the nerve endings, polyneuropathy being all the nerves.
Either has the ability to stop me immediately and cause instant death.
So, the autonomic nerve affects my complete digestive system and is currently stalling it creating hell at the moment.
The FND component apart from the bouts of paralysis it is also defaulting me to shuffling and being unsteady on my feet. I have found a work around which is to stop moving when I shuffle, wait a few moments then consciously think walk and lead off with a large step. This seems to force the brain out of the shuffle default into a normal walk mode. The process of concentrating on what I'm trying to do seems to be a key component, a manual override. It will be interesting to see if this theory works when next I have a bout of paralysis, it hasn't before but then I never knew I could make this change. It is not a cure, at least yet, but is a work around getting results so far.
Cheers
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1 ReactionFor many, attending the Mayo Clinics in Arizona, Florida, or Minnesota is logistically impossible, however, by accident I found out that the Mayo has "Network Members" in 30 locations across the US, plus another 10 or so across the world. Here is the internet address to see if you are near one of them. https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members.