Where am I now, two years later? | Functional Neurological Disorder

#functionalneurologicaldisorder #chronicillness #grief
Two years have already passed since I was hospitalized and diagnosed with functional neurological disorder and I thought it'd be important to reflect on where I'm at now, from where I've been.

[@miaombak655]

I'm 2.5 years post diagnosis of FND. I was symptomatic for many more years before though. . I think my first big attack was in 2005. It was thought I had Guilleaume Barr, it wasn't. My FND gives me MS symptoms, this also was strongly suspected, but my MRI ruled out lesions, but it was also not completely normal. Something that is now being noticed on many FND patients MRIs and is being researched further. It's a roller coaster, this FND. The grief part is very real. Your blog really resonated with me in many ways. We're on an unknown journey...symptoms come, go, lessen and excerbate, and new ones appear! Thankyou for your honesty and realness. I've just subscribed. 🌹

[@TanyatasticTalks]

Mia Ombak definitely a roller coaster, I assume it still comes in waves for you as well as yes, symptoms coming and going is just part of it all, even though I wish it wasn’t. Thank you for subscribing!!

[@kathleentucker1238]

Thanks for more words of inspiration Tanya! My tears welled up right along with yours. July marked my 8th year since my original RHS diagnosis (plus all the fallout that goes with a late diagnosis), & also the 18th year since the love of my life passed on. Anniversaries like mine & like yours are traumatic, & we can be super-vulnerable during these times. As you said, empathy & compassion for what others may be going thru' comes much easier than before our own traumas. Blessings always!

[@TanyatasticTalks]

Kathleen Tucker thank you for sharing!! I’m just trying to do what I can and be as real as I can about what’s going on 🦋🦋

[@linzb255]

I would love to see the stages of grief with chronic illness. This was a great and realistic video. Very proud of you!

[@jgill2861]

That's how its been for me , I had mine in Sep,2016. And like I have told you 3 weeks ago I started having problems with my ear.(Ringing, high pitch, inflammation that doesn't go away). Its a fight every day,up and downs. But I learned to appreciate life more. Keep Fighting..

[@TanyatasticTalks]

J Gill same to you, I hope something does come your way that is able to help you.

[@jgill2861]

@@TanyatasticTalks So where you from?? I'm from Seattle,WA.

[@TanyatasticTalks]

J Gill I’m from Montreal, Canada 🇨🇦

[@jgill2861]

@@TanyatasticTalks Nice haven't been there but I want to visit.

[@nirmaladrieskens4338]

Great video ❤️❤️❤️

[@shelleydoherty7325]

Tanya, your amazing. I really appreciate how vulnerable you can be. I think you so courageous and articulate. Thank you for sharing this experience with us. Xo

[@tyler3894]

I was diagnosed with it at 7... I am now 32... My attacks lately has been stuttering... I work in fast food and I am on headset... All the time... The stutters won't go away... I just have to laugh at myself and make jokes about my condition.

[@paigemosher1669]

Thanks so much fo your reply. I will look up Jennifer brea , I saw her movie unrest and I do have Crohn's c fatigue syndrome ,it starts when I was 24. I was still v rly functional after first year of it. I am 55 now and in full menopause when I was 50 1 year later developed Crohn's disease and the past year my c2 c3 subluxed and is hitting my spinal cord.lalso got ehler danlos syndrome after 50 which cause the subluxation . My fear is the pain after the surgery!Ihad a dream that I would be ok in the fall season.Impathze with you about the neurological symptoms.They will get better Iamm a fighter like you. You mad my day by replying to me, THANKYOU tanya

[@ptitspieds6175]

Hey Tanya! I just want to thank you for the video and congratulate you for this year! I do not know you personally but I know that you are a strong person :) continue your fight! As you said, these experiences make us stronger but it's always hard to remember bad times. Thank you also for the motivation that you brought me during this year through to your videos! Peace

[@Lentilboots]

I'll be coming up on my 3 year anniversary soon. So thank you for sharing! I also appreciate you must have put so much time and effort into editing your video. :)

[@keiphillips7648]

Amazing!!

[@sunnystar505]

This September is my 1 year anniversary and I have ptsd from my stroke like episode and month long hospital stay. I am still grieving still angry still scared still very sad. Nobody understands how bad FND is especially when there is no test exam that shows the doctors that validation that something is really wrong and you are not making it up or exaggerating

[@TanyatasticTalks]

I know the medical system is not the best especially when the doctors are not informed. I know in the UK there was just a conference on FND where many health care practitioners attended and learnt - 500 people which is great. I’m hoping it will continue to come to North America cause we need the help here too and people that are passionate about helping people like us.

[@brianbordenkircher52]

I have been struggling with FND for just over 2 years now. I also started posting some videos of my FND experience on my youtube channel as well

[@franklysocial]

Sep 1st 2020 i went into the icu with Covid / Meningitis infection and inflamation of the brain and spine basicly daying as of today i regain my ability to walk nearly def and really loud tinnitus plus severe nerve damage but we are alive! Good luck with youre condition luv

[@paigemosher1669]

Tanya, I am a subscriber I love listening to your talks. I M Having a lot of anxiety right now, I have to have a complete cervical spine fusion. Hopefully it will get rid of my pain and dizziness. I had a second opinion and was told not having I will be paralyzed, how do I chop either the fear and anxiety of all of this?

[@TanyatasticTalks]

Paige Mosher have you heard of a woman named Jennifer Brea? She is a well known advocate for chronic illness. She’s had craniocervical fusion done last year, maybe her story can help relieve some anxiety for you. In her case she was willing to do it, in hopes that things would improve for her. Of course there would be no guarantees but she’s doing better than she thought and some of her symptoms she experienced before are gone. She’s blogged about her experience in articles etc. Just google her. I think it’s completely normal to be scared and have anxiety, this is a big operation- I think deciding to do something for your own quality of life is obviously completely up to you and of course I know there are risks (as with everything) but maybe pinpointing what the anxiety is about would be helpful, perhaps you’ve already done that but understanding where it’s coming from whether it’s the fear of the unknown, the recovery, etc. If you’re asking yourself a lot of “what if” questions those are easy to spiral with. Maybe asking yourself and thinking about what this surgery would offer you, the good that can come of it, how different you’d feel etc might help. Anyways check out Jennifer Brea, I hope her story will be encouraging for you. Keep me posted as to what happens! (Hope I’ve been able to help 🦋)

[@wandadidonato7663]

My mother in law found your videos, I have been recently diagnosed with Ramsay Hunt Syndrome, causing Bells Palsy. I would love to pick your brain so to speak. Do you have a private messenger I could ask you a few questions on?

[@TanyatasticTalks]

Just messaged you on the other message you sent, email me!🦋

[@bernardsalter5101]

👩‍🦽👩‍🦯🚶‍♀️😊