My First Post - Mostly Myoclonus

[RubyRena]

I told my story in my profile. I'm 65. I'm from California. My mom had MS. She spent years trying to get a diagnosis.

I have been struggling with "Essential Myoclonus" and occasional vertigo and a usual weird slightly off-balance feeling since 2006 when I was 48. Thought this would go away after menopause. Nope.

I recently experienced a non-epileptic seizure. It was scary but led to this diagnosis.

I have had 2 EEGs and 3 MRIs which were all normal.

I also have anxiety about all this weirdness and the fact that I have been on clonazepam for a long time and the shaming I get from some neurologists. I see a CBT therapist to deal with living with all this.

Must go to bed now-- sleep hygiene so I can wake up with a jolt! I am generally pretty healthy and love to dance and hike and find both therapeutic. I work in a school full time and my cognition seems fine.

I am not on social media, but I hope that I have found a place where people can relate to my weird syndrome (now a thing called FND). Maybe?

[CreativeBird]

hi Ruby

I’m not a social media goer ether. This is the closest to it for me.

It’s all very weird hey? This FND thing! I am learning to accept it all after this flare hanging around for more than 2 years now. Even after functional symptoms for most of my 50 plus years. We still have the goodness of our spirit so that’s what I hold onto. My Mum carried muscular dystrophy to my sister and I recently lost my Dad to multiple system atrophy so I’ve kinda got used to seeing people past their physical status 😌.

Functional seizures aren’t fun. I’ve just come away from a week of incessant seizure events blending with a heap of severe weird whole body twisting. Scariest new experience is my muscles moving food to my stomach shutting down for a few days after bad batches of seizures.

Anyway, happy to chat now and then. I’m in Australia.

Blessings

K

[RubyRena in reply to CreativeBird]

Thank you for your reply, kindred spirit (or perhaps, "mate"!?) It sounds like you have been experiencing the vague, unexplained neurology that we don't want to define us, yet can't be ignored.

When our robotic overlords take over medicine, it will be fun to see what they come up with short of euthanasia! Sorry-- gallows humor.

I had one neuro tell me to get a test for Huntington's Disease! Both my parents are deceased at old ages and neither one had it-- autosomal dominant y'know.

Crazy, weird and trying to focus on the good and calm. I like to be active and have fun, but this past week I went through some depression, daring to think that I can do anything at my advanced miserable age! Enough of that! Thanks for the message! --RubyRena

[CreativeBird in reply to RubyRena]

Buddy, pal, cobber, mate ☺️ Sunshine will do! I like your humour!

Depression sucks. My mainstay has been disassociation and that gets depressing if I can’t lift it. Meditation is the go to for me. Yesterday I rediscovered hitting a singing bowl. It helps arrest a seizure! I lean toward all this weirdness being a vibrational thing. We are all running on electric fields so there’s a lot effecting the central nervous system at the end of the day. I could harp on forever.

If you can hike, then hike!!! Nature is the very best salve. Seriously, hug a tree or three. They all have their unique vibration. My career relies on site visits for research on national parks. I design and illustrate interpretive signs for natural spaces. While I am now wheelchair bound for any trips outside home, I am no longer able to offer that part of my services. My clients are being understanding while I attempt a rehab. so I can accept more contracts.

If you do ever end up with movement disorder, go walk in deep sand. Last weekend I got really bad—speech loss and all. I got my husband to wrangle me down to the nearest dry river bed after noticing an Easter trip to the beach helped my movement. This last weekend on the sand, within 30 seconds, I didn’t need my cane, started talking well and felt pretty normal. Maybe I should take a swag down there and stay!!! lol

So yeah, A.I. bot doctors? Bring it on. At least one may understand my weird need for crystals and the noticing of mercury retrograde effecting my electrical function. And the full moon eclipse?—notice how that pulls your waters around our conductors!!! 🥹 ?

Let me know how the tree hugging goes! I am serious by the way😅

Or dance

[RubyRena in reply to CreativeBird]

I wasn't going to ramble on as I am wont to do, BUT yeah! I feel ya! My husband says I have an "electrogeist" and I complain of dizziness and swimmy head around the full moon and before storms. My neuro says I HAVE a movement disorder. He is a movement disorder specialist.

I will try that sand thing because I am fortunate enough to live near the beach. I grew up at the beach. Of course that is why I crave trees and mountains and even rain. I used to be a graphic designer (for signage and print) before I had kids, then the school job worked out for me.

I tell my therapist it's even better for me, rather than the students because I get to walk about, be social, get up, get dressed, and (maybe) help teens, especially post-Covid.

Some days are dull and I might sit in one of our brilliant (sic) California classrooms jerking and twitching away and teens never even notice! If it gets bad, we have a lovely nurse's office and quite a few sympathetic psychologists!

My son has recently discovered the healing aspects of hiking, and now comes with me, eager to see what's around the bend or on top of the hill. Then HE goes for a run!

Oops, I'm rambling, but even though the neuro stuff is so bloody frustrating and scary, I am working on not letting fear push me around. What if... what if... what if... The current safety "religion" is a false one, although I am not exactly ready for the X games! Getting off the soapbox now. I swore I would make this short!

Cheers!-- R

[CreativeBird]

hi Groover, I enjoy your soapbox ramble. It’s refreshing because most FNDers are stuck in the fear cycle. I confess I recently got a Facebook account in another name just so I could get more local support recommendations. Oh my!! There is a good mind body soul arm off one which is great for some spiritual bypassing but that’s not so bad for us mob anyway. But all the other groups are in so much despair. I get it but a lot isn’t conducive to support for actual recovery possibilities. Is there a way we can stay chatting out of public view? Maybe you go to google. kristyday.design??!!

[MONIREN]

Hi, sorry to hear you are struggling. I was diagnosed with FND 2017. For me it's progressive, started with crab walking, veering to the left. Slow speech, vertigo and myclonic jerking at the most embarrassing times. I've seen people edge away, I'm fortunate that most staff don't make an issue of it, and wait patiently for me to find my words. Neurologists, most don't care, I've been to 3. Over it. Last one just told me to live with it. It's interesting you say soft sand helps, with me, it's like when you watch videos of dogs with shoes on, very weird. The more tired I get the harder it is for me to function. Best explanation I've heard is the brain doesn't seem to connect to the body, more a software problem than a hardware problem like MS. I have many other health problems, just learning to cope with my new normal. Hope you find a way to cope, maybe there is another diagnosis. Take care. Moni