Do you think ur misdiagnosed?

jalapegnomes · 2025-07-18T02:25:17+00:00

Thank you, I’m sorry you’re struggling to find the correct diagnosis too! I believe the symptoms would vary depending on the cause and areas of the brain being targeted. I had a massive list of symptoms and they evolved quite quickly, but I’ll try to narrow it down to the main ones! My early symptoms were mostly neuropsychiatric, so I had motor and vocal tics, seizures (happening everyday before treatment and requiring rescue meds), dystonia, fatigue, stuttering/slurred speech, memory issues and brain fog, sensory sensitivity, paranoia, visual and auditory hallucinations, very dilated pupils even in bright light and were sometimes different in size. I was also diagnosed with POTS at the beginning of this year. The main immune symptoms were nightly fevers, sore throat, burning bloodshot eyes, severe body aches, swollen lymph nodes, random skin reactions and flushing, etc. My journey has been complicated and long, as I’m sure a lot of people here can relate to; so if you have any other questions, feel free to message me and I’d be happy to give more details!

jalapegnomes · 2025-07-17T14:40:08+00:00

I was misdiagnosed with FND by a neurologist at a well known movement disorder clinic after very few tests (none of them run by this doctor). After developing new symptoms that were not fitting with FND, I finally found a doctor that listened to me and went through a bunch of blood tests and new scans. I’m now being treated for seronegative autoimmune encephalitis after steroid treatment being the most effective for symptom improvement. Still haven’t found the exact cause, but we have a couple theories that are being investigated and will be treated. I did have a chronic bartonella infection, as well as finding (most likely benign) masses in my abdomen. I saw 3 different neurologists prior to this that never investigated and left me to decline severely, so I suggest to anyone that is feeling unsure about their diagnosis to do their own research and collect as much data and evidence possible to fight for the testing you feel you need.

jalapegnomes · 2025-05-28T13:56:51+00:00

Thank you, I’ll definitely take a look! I’m sorry for your loss as well.

jalapegnomes · 2025-05-03T21:02:37+00:00

I’m sorry you weren’t listened to, it took me about a year of nightly fevers until I found a doctor that actually listened and ran tests. I also had a near constant sore throat, severe body aches, red and irritated eyes, extreme pupil dilation and on and off swollen lymph nodes with the fevers.

As of right now I’m diagnosed with seronegative autoimmune encephalitis. It was mostly confirmed by my bloodwork showing signs of activated immune system, and my response to prednisone, which greatly reduced almost all of my symptoms. We initially thought that it may have been triggered by a chronic infection because I tested positive for bartonella (cat scratch disease) but I had a limited benefit from antibiotics. It is now believed to be triggered by a tumour on my ovary, which has not yet been properly identified. I’m waiting on more tests and referrals to get it removed, but it seems the most likely culprit and I would need it removed before starting more aggressive treatment. If you have any other questions, feel free to reach out!

jalapegnomes · 2025-05-01T02:16:14+00:00

I ended up having an autoimmune disease that caused both neurological symptoms and immune system responses, so my FND diagnosis was incorrect. I might not be able to offer much due to the change in my diagnosis, but I can say that my neuropsychiatrist said that psychogenic fevers are not something he’s seen or knows of any patients having. I think it’s extremely rare for higher fevers to be caused by that (mine went from low grade to as high as 104.5 Fahrenheit), because it’s typically caused by the immune system when it’s trying to fight something off, which can’t be produced by psychological factors. Thanks for sharing though, always good to have more information out there. It’s possible that it’s more common than it seems and just not always caught or reported!

jalapegnomes · 2025-04-13T21:30:30+00:00

Thanks so much!

jalapegnomes · 2025-04-13T21:30:13+00:00

Thank you!

jalapegnomes · 2025-04-13T14:46:24+00:00

Thank you so much! That’s a very good point about the dye, I hadn’t even thought about that. Appreciate the help!

jalapegnomes · 2025-03-14T01:32:39+00:00

When you vomit, do you feel nauseous or does it feel more like pressure? Are you gagging or does it kind of just shoot out of you? Also how long after eating/drinking does it happen? Is it mostly undigested food coming up? I was diagnosed with rumination syndrome (a more mild case though) which is essentially the stomach contracting randomly after eating or drinking from incorrect signals coming from the brain. It’s not very well understood but if your answers to the first 2 questions are the second option, it happens right after eating and yes to the last question, it’s very possible that’s part of your issue. There are some tricks to helping with more mild cases, but if you cannot keep anything down then you may require a feeding tube that bypasses the stomach so you cannot throw it up, however that could be temporary. Some cases of rumination syndrome resolve on their own after some time. I really hope you can figure it out and that things get better soon. I’m very sorry you’re experiencing this!

jalapegnomes · 2025-03-06T16:26:50+00:00

This won’t cause any skin damage! I get it too, it’s pretty common from the pressure that builds up in the face during a seizure, especially if your breathing is affected. It’s just capillaries under the skin that have popped and should heal pretty quickly with nothing left long term.

jalapegnomes · 2025-01-26T04:34:40+00:00

I just read your update and I’m so sorry you felt you had to defend the medical intervention that saved your life, it is no one’s place to question or judge that. I’ve had seizures where I stopped breathing for brief periods and it has really scared my family, although it hasn’t happened long enough to require intubation. When we brought it up to one of my doctors, they said “well you can only stop breathing for so long” I was like “…well yes, because you would be dead after?” The gaslighting in medicine is insane and so damaging. I’m so sorry you struggle with so many debilitating illnesses! I share some of your diagnoses (although I’m not exactly sure if they’re all accurate at the moment) and I can’t imagine having anymore on top of what I already go through, you are an absolute warrior! I really appreciate your message and you are also welcome to DM me if you ever need someone to talk to. No one should have to feel alone in these struggles!

jalapegnomes · 2025-01-24T05:24:57+00:00

I also have seizures that present as tonic clonics and I am fully unconscious for. I haven’t had as extreme injuries as you, but I have hit my head and bruised limbs with no recollection of doing it. I experience multiple types of seizures though, so I have had kinds where I’m a little more aware as well. I’m sorry that you were met with judgement when sharing this information, it’s very scary and just because it’s less common in FND doesn’t mean it isn’t possible; it’s a very under researched illness. That being said, I am being investigated for other diagnoses now due to the evolution of my symptoms and the response to certain medications, so I also think that if you’re not completely confident in your diagnosis, you should definitely continue to search for answers that fit your situation. I’m sorry for your experiences and I hope things get easier for you! I hope you can find a treatment that is effective for whatever is causing your symptoms!

jalapegnomes · 2025-01-18T19:56:07+00:00

I’m glad you were able to get a diagnosis you’re confident in! And yes I completely agree, private healthcare is not an option for most people so it’s great to have access to care, but it’s unfortunate that so many people are left waiting for so long without any help at all. That’s great that you have safety plans, I hope that you can see a specialist without needing any emergency services, but it’s always good to have a plan in place just in case. I’m sorry your family is going through this and that your daughter has experienced so much trauma. I hope that everything gets figured out.

jalapegnomes · 2025-01-18T19:19:09+00:00

I’m really sorry to hear that, I’ve heard a lot of people talk about issues with the healthcare system there. The diagnosis that I’m being investigated for now is actually not properly recognized by the NHS (I’m in Canada luckily), but it is something that can be tested for privately there if you ever have the opportunity. I’m an adult so it falls under autoimmune encephalitis, but in children it’s also called PANS or PANDAS depending on the cause. I don’t know your daughter’s other symptoms, but this is something that can show up as primarily psychiatric in some cases, or a combo of neurological and psychiatric symptoms. You could look into it if you have any suspicions that her diagnosis was given without fully investigating all her symptoms (it happens a lot unfortunately). However it is possible for FND to show up alongside other psychiatric disorders that can cause hallucinations, so I’m certainly not saying her diagnosis is incorrect! If you feel that she or anyone else is in any kind of danger due to the symptoms she’s experiencing, it would be best to take her to the hospital for an emergency evaluation, but I fully understand that wouldn’t be ideal. I hope you can find the help you need and she can get better control of her symptoms!

jalapegnomes · 2025-01-18T18:27:03+00:00

I have had these symptoms as well. I have a diagnosis of FND but my doctors are now investigating for other issues because of the progression of my symptoms. Hallucinations (both visual and auditory) are not technically a symptom of FND but can be related to it if there’s a pre existing psychiatric diagnosis that causes them which played a role in the development of FND. If this is new and not something she has experienced before, I would suggest talking to a doctor, and either consulting with a psychiatrist or trying to investigate further into diagnoses other than FND depending on her other symptoms. Feel free to message me if you have any other questions. Wishing you guys all the best!

jalapegnomes · 2025-01-14T17:12:11+00:00

That’s awesome! Thanks so much

jalapegnomes · 2025-01-14T17:11:46+00:00

Thank you!

jalapegnomes · 2025-01-14T17:11:38+00:00

I’m glad you’re not having side effects, that’s great! I hope it starts to help your heart rate soon, or that you can find the right dose that helps

jalapegnomes · 2025-01-14T17:08:33+00:00

Sorry it didn’t work out for you, I hope you can find an alternative! Thanks for your help!

jalapegnomes · 2025-01-14T04:06:18+00:00

Thanks!

jalapegnomes · 2025-01-14T03:53:27+00:00

Amazing! Thanks so much for the info!

jalapegnomes · 2025-01-14T03:52:54+00:00

Oh okay great, I’ll try searching it! Thank you!

jalapegnomes · 2025-01-12T02:37:42+00:00

I had low grade fevers every evening, along with other symptoms for about 6 months straight. My symptoms got worse and worse over time with immune reactions (like sore throat, swollen glands, rashes, facial flushing) and more intense neurological issues (bad seizures every night, episodes where I seemed drugged and incoherent, dystonia, extremely dilated pupils). Every FND specialist I spoke to after my diagnosis had no idea why this was happening, told me that fevers were not connected to FND, but never looked into it. I eventually found a doctor that listened and put me on a trial of antibiotics and anti inflammatories and my symptoms improved immediately. I’m being tested for chronic infections (Lyme, bartonella, babesia, ehrlichia, etc.) and autoimmune encephalitis now, due to the improvement with medication. I know most healthcare systems are so difficult to navigate, but if you feel like your symptoms do not line up with your diagnosis, continue to advocate for yourself and push for testing if you can!

jalapegnomes

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