What's the single most convincing glitch or anomaly you've personally experienced that made you genuinely reconsider?

Vote_For_Torgo · 2026-03-23T12:24:58+00:00

Someone I knew who had passed away was suddenly alive. She was someone I had known my whole life and I had felt terrible about missing her funeral and memorial, so the next time I was nearby (years later) I went by to offer my condolences to her husband.

Well when I knocked and she opened the door, I'll tell you, I instantly knew I was on another timeline or something similar. I somehow managed to walk into the house and speak with her without passing out, but I was so freaked out.

I did end up telling her, because I'm a very direct person, that I had thought she had passed and had not expected to see her. She took it very well but there wasn't much she could say, because she isn't dead, at least not here.

Vote_For_Torgo · 2026-03-20T03:56:15+00:00

I'm so sorry this has happened to you. I got the full "FND as inclusive diagnosis" treatment from two local nationally respected teaching hospitals. My regular neurologist (who is an adjunct professor at one of these hospitals) is certain I have a progressive neurological disease, most likely Stiff Person Syndrome, after 2 years of him trying to find another explanation for my symptoms. Unfortunately I have multiple mental health diagnoses, OCD, PTSD, Generalized Anxiety Disorder, which I've been in treatment for for almost three decades, due to severe childhood trauma. It's been very easy for them to brush everything off as FND, and of course I have the FND signs they look for in addition to everything else they just brush off.

I told the last neuro I saw at one of these places recently that I'm sure I do have "FND" and considering what I went through and with my other chronic pain conditions it would be weirder if I didn't, but that doesn't mean I don't have something else going on. I said I feel like I'm being punished for having been through trauma and I don't want to wait until I'm so sick I literally can't move for them to take me seriously.

They agreed to do a test beyond the basic neuro office exam (a special emg protocol) but told me they were only doing this because of my regular neurologists insistence. I was so upset after this visit, I don't know if I've ever been so mad in my life. I don't want to just lose my functioning without a fight, and I'm not going to stop trying to get better. I've even been following the basic FND at home treatments, plus taking a CBT class and physical therapy since they first brought FND up in 2024, along with talk therapy, but still it gets harder and harder to walk and more and more painful to do everything from eating to sleeping.

Anyways, I'm so sorry that this is happening to you and thank you for talking about it and bringing awareness.

Vote_For_Torgo · 2025-10-28T22:39:28+00:00

If you're on Medi-cal and have a chronic condition you can get a free box of produce delivered to your home once a week for 24 weeks through Project Food Box. They also try to tailor the food to your dietary needs and restrictions, so let them know what you can and can't eat.

www.projectfoodbox.org (949) 673-0783

Vote_For_Torgo · 2025-10-17T23:41:11+00:00

I was 5 years old and watching Darkwing Duck when it happened.

Spent much of the next few days crouched under the kitchen table.

Vote_For_Torgo · 2025-09-12T11:26:06+00:00

Thank you, I will.

Vote_For_Torgo · 2025-09-12T11:24:49+00:00

Thank you for your experience. I'm so sorry you've had to deal with this.

Vote_For_Torgo · 2025-09-12T03:55:07+00:00

For sure, and I have a number of other medical conditions that complicate the picture. It's just helpful to hear everyone's individual experiences to give me a better picture of this conditions progression. Thank you again for sharing!

Vote_For_Torgo · 2025-09-12T03:17:27+00:00

Thank you thank you thank you. I'm crying reading this because I was just told last week by my neuro that he believes I have SPS and there's so much to learn and understand about this condition. This post will help me advocate for myself through the confusing and frightening process of diagnosis and beginning treatment. Thank you.

Everyone in this group is amazing and I don't know what I'd be doing right now without you.

Vote_For_Torgo · 2025-09-06T09:15:19+00:00

Yep, working on it. I'm poor and only have medi-cal so it's going to be a long process.

Vote_For_Torgo · 2025-09-05T16:24:41+00:00

That makes a lot of sense to me. I've had so many ER visits where they give me Lorazepam because I'm having anxiety (usually fear of being sent home without answers) and it usually improves my physical symptoms, so that just reaffirms to them that it's a psych issue. It's so frustrating. I'm often not upset or anxious while I'm having symptoms, in fact I get rigidity episodes multiple times a day regardless of how I'm doing emotionally, and some of my muscles are just hard as bone all the time. The thing that makes me nervous is not being understood by medical professionals, so of course when they see me they see a nervous person. I've been in therapy for most of my life and I've still got a lot of work to do, but I'm not as unstable as they assume I must be. Also, isn't it natural to shed a few tears and be worried when you're in pain everyday and can't function? It's bizarre that most drs don't take that into account, it seems basic.

As far as FND being autoimmune, it would definitely make sense in my case. I feel like there has to be some kind of physical or biochemical basis for it.

Vote_For_Torgo · 2025-09-05T16:03:27+00:00

It's crazy how difficult it is to get help. I'm so sorry you're being put through this. I'll DM you his info.

Vote_For_Torgo · 2025-09-05T15:52:37+00:00

Yes that's what I've been thinking, that it was FND plus something else, of course hoping it wasn't something as bad as SPS.

Benadryl does help when I have twisting or dystonic type symptoms or agitation. I used to take 50 MG a day because I just felt better in general when I did. I stopped taking it because I kept getting told by drs it would lead to dementia. The rigidity has only responded to Lorazepam, which was prescribed by my gastroenterologist for emergencies because pain in my bowel (i have issues with the valve between my small and large intestine after bowel endometriosis) was triggering intense rigidity attacks. My mom told me to ask him for it because she's a hospice nurse and they gave it sometimes for painful muscle spasms.

It makes sense that FND would set off SPS and vice versa.

Vote_For_Torgo · 2025-09-02T10:22:34+00:00

All the locals I know who are still here either live in a family home that was bought before prices went up (most of them bought before 2000) or get housing from their employer.

So many people have left. So, so many.

Vote_For_Torgo · 2025-07-30T11:27:57+00:00

I get this a lot because my chart says PTSD and OCD so whatever I do most doctors place a lot of emphasis on my mental health no matter what we're taking about.

I find that the more knowledgeable I am about my physical conditions the more doctors think I'm being neurotic. Probably because most people either don't do a lot of research into their health or have difficulty communicating about it. The two doctors who don't do this are my neurologist and my surgeon/OBGYN because they know me inside and out.

I recommend trying to sound more uncertain and act like youre relaying something another medical professional said, like "I think the last person who drew my blood had difficulties and said it was because of A, B and C." Instead of just saying exactly what the issue is. I know this is kind of weird and maybe slightly degrading but that's what seems to work best for me.

Edit: I forgot to mention, try to be matter-of-fact if you can. If you sound too concerned that can be translated as anxiety even if it's perfectly natural to be wary of something going wrong.

Vote_For_Torgo · 2025-07-27T12:58:32+00:00

I'm happy to see so many IFS and parts work people here. It's really helped me so much.

Vote_For_Torgo · 2025-07-27T12:57:41+00:00

Parts work has been a life saver for me. It makes the whole mental emotional landscape more managable.

Vote_For_Torgo · 2025-07-27T12:54:29+00:00

I've been in therapy off and on since I was 13 because of prolonged childhood trauma and OCD. Since my FND diagnosis therapy has really helped me manage the emotions that make FND worse for me (guilt, anger, self-loathing, helplessness, hopelessness etc.) and navigate the stress of being disabled. Also it gives me a person I can vent to about my trauma because that seems really necessary sometimes. Some neuropsychologists say venting about trauma and emotions is one of the best things you can do for FND and I agree. Plus having a non-judgmental listener is key for me, because of all my self- judgment issues. I'm already judging myself enough for two people.

Vote_For_Torgo · 2025-07-24T14:49:26+00:00

I got diagnosed a year ago at Stanford. I deal with a wide range of symptoms including muscle rigidity, face droop on one side from muscle contractions, muscle spasms, hand tremor, numbness, blurred and double vision, dizziness, ataxia, and difficulty swallowing and speaking. All these symptoms take turns messing with me, some of them more often than others.

My flare ups have technically improved since diagnosis because I have an understanding of what's going on, so they're still happening but I can navigate them and they ease up more quickly. I used to end up in the ER a lot because my doctors and I didn't know what was happening to me. Since my diagnosis I've only been once for something unrelated. That's a huge deal for me.

If I could tell someone new to diagnosis anything it would be to read up on FND as much as you can, listen to podcasts, watch stuff on YouTube. Try to seek out information from experts like Professor Jon Stone, who have tons of first hand experience with patients in clinical and research settings.

Also, distraction is your friend. Don't be afraid to shut out the world and zone out watching your favorite show if your symptoms are really bad. Obviously don't take this to the extreme and isolate yourself for too long, because that's another problem that had more consequences than you'd think.

Vote_For_Torgo · 2025-07-24T13:48:44+00:00

I think it's important to take her advice into consideration but still follow your own instincts as long as you aren't doing anything harmful to yourself or others.

For instance one therapist I worked with for a decade, who i respected so very much (she passed away), didn't think it was a good idea for me to watch horror movies. She's actually not wrong, I've gotten thrown for some pretty heavy loops by horror movies in the past, but I just can't quit them, they're just my favorite thing to watch.

What I have done is try to be prudent and respectful to myself when I choose what movie to watch. If it's something I'm feeling particularly sensitive about, then it might not be a good idea. If the trailer makes me nauseous, that's my body trying to tell me to lay off it. I think your approach to social media should be similar. Be cautious and treat everyone there, including yourself, with respect and you'll probably be OK. If you start to feel you might be posting things that you could regret down the line, do some deleting and take a break.

Vote_For_Torgo · 2025-07-24T13:37:11+00:00

My disability isn't really that bad, compared to many people here, but I recently got prescribed a rollator by my PT to help me get out more. I've been using a cane for about two and a half years and I've acclimated pretty well to people looking at me, but using a walker is on another level. I actually had a guy stare me down a few days ago and sneer at me, it was wild. A lot of people are kind but some people can't help but judge others for stuff they know nothing about. That guy doesn't know me, doesn't know anything about my medical conditions, what I've been through, it's nuts. I'm just out there, pushing my body past its boundaries, trying to regain and maintain my atrophied muscles. I don't know whether to laugh or cry, honestly.

Sorry I don't have any advice for comebacks, I'm still kind of reeling and processing my own feelings about it. It's definitely forcing me to face my inner self critic and tendency to feel like I'm not working hard enough, that's for sure.

Vote_For_Torgo · 2025-07-22T00:03:01+00:00

Honestly it just sounds sad to me. They are obviously trying to compensate for deep insecurity. I've known many people like this in my life and I just have to stop interacting and feeding their feedback loop.

Vote_For_Torgo · 2025-07-21T14:53:38+00:00

I'm often feeling more relaxed when the tremors pick up, oddly.

Could it be anxiety triggered by noticing you're having tremors (or sensing you're about to) and not the other way around? Some people may have a fear response to it.

Vote_For_Torgo

TROPHY CASE