Kit ✨♿️
Region: US
Monday 10 June 2024 21:55:00 GMT
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💜KittieQueen💚 :
it really feels like they refuse to diagnose you to keep you coming back. Like why would a dr refuse to diagnose you if the real true answer is there... its all about money it seems.. 😭😭
2024-06-11 05:15:33
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MangoTheSheep🍉🏳️⚧️🏳️🌈 :
yo, this 100% reminds me/matches what a doctor told me when I went to find why the heck my hand was numbing, cramping and tingling. He checked me up, we did EKG, etc and he said it could be
2024-06-17 08:07:49
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CleverAdventurer :
I'm hypermobile with fibro, pots, pnes. I was diagnosed by a neurologist with FND (PNES has high rate of symptom occurrence here). What actually did help was super low dose amitryptiline (1)
2024-06-11 19:30:43
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softlyblue2 :
Ask your dr what his differential diagnosis is/are and ask specifically for informed consent next & every visits
2024-06-10 22:14:22
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Molly Bynum :
Preach! My new Neuro just mentioned I had PNES, removed medication and sent me to a therapist. I had the worst seizure of my life 2 days later 😔
2024-10-30 21:21:09
1
Mali Finn :
There is actually no evidence that they are psychologically responsible, so they should drop the P.
2025-05-28 02:58:27
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Nixxie❤️🖤🤍💚🍉🪐 :
If only we could send them links to our videos because you just said everything that doctor needs to hear!
2024-06-10 22:14:13
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alli🌞 :
How did they determine you had PNES? I have convulsive pre/syncope and I shake when I pass out but now I’m wondering if it’s actually seizures!
2024-06-10 22:05:44
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Sercan :
Sounds like when I was put on Topiramate. every neuro doc I’ve encountered has been awful. Idk what it is but they need to do better. I hope you find a competent one. Your health is top priority!
2024-06-11 05:49:57
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Rook :
Time to find a new doctor, one who listens and hears you and who puts you at ease. Chronic illness is so hard to manage and good specialists are rare. HUGS.
2024-06-10 22:38:29
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Sundamsel :
I either get hemiplegic migraines or PNES. There isn’t a great way to dx either, mostly it’s symptom based. Either way lorazepam shortens them when it happens and Qulipta stops most from happening.
2024-06-10 22:25:03
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Morgan :
Im sorry, that does indeed sound off...& aren't half those side affects symptoms you already deal with? which i feel would then make everything worse?
2024-06-10 23:46:17
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Alana Altemus :
I just came out of an er visit for dysautonimia and unstable low BP walked out with emphysema dx
2024-06-10 22:48:37
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Momo :
yeah, I have PNES. Neuro told me to go to a psychiatrist. I'm now looking into Functional Neurological Disorder (common with PNES) and programs.
2024-06-10 22:23:05
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alli🌞 :
But yes my biggest problem with doctors is the fact that they push medications that have horrible side effects and don’t even work and it seems like you don’t even have a say in what’s being put into
2024-06-10 22:06:24
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PumpkinVlogs :
Correct ✅ they usually have you seek therapy, meditation and etc but because everyone with nes has different triggers there’s no real this is a medicine that helps type of deal.
2024-06-10 22:06:21
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poetrywithashley🇨🇦 :
I’m not a healthcare professional but it’s probably because since there’s no good treatment, they’re trying to find something that might work. I have felt like that in the past with my medical history
2024-06-11 14:21:57
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Annie’s Hubble Creations :
(2/2) And they either don’t go away OR they are literally a fatal risk brushed off. Gosh, I’m sorry that happened. You deserve better.
2024-06-14 00:02:19
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mariareginaa9 :
Hey :) I dealt with this a few years back (my episodes were actually POTS related tho) but I’ve been down the whole PNES/ epilepsy rabbit hole before.
2024-06-12 19:29:17
2
Teenfantasynerd :
In terms of your doctor putting it in your medical chart I recommend saying that you understand that risks in it being in your medical chart 1)
2024-06-11 17:09:00
2
Kristin M :
My daughter is epileptic. I hate having her on seizure meds. The side effects are horrible. The only med we have found that has little side effects so far is Epidiolex which is the first FDA approved
2024-06-11 14:57:04
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Frisco17🆘🇺🇸🏳️🌈 :
Chronic illness here too. I had a dr try do that tactic with my ADHD. He was “worried” about how other drs would treat me if I had the diagnosis. I dropped him after that appt. I feel for ya ❤️
2024-06-11 00:51:05
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Aubrey 🦋 POTS & GLP-1 :
Might be time for a second opinion. It’s easier said than done, but there might be a better, more proactive doctor who will help you more? 🥺
2024-06-11 00:21:43
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AthenaRae :
Sounds to me like you need to find a new neurologist 😬😬😬
2024-06-10 23:51:43
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Sparklemommaz :
So wait, hold up. If there is something wrong with the vasculature of blood pathways to brain they’re still considering it PNES?!
2024-12-02 19:32:55
1
💕 :
EEG results can be fine even if you have epilepsy. EEG shows how your brain is sending electrical signals during the test, not after or before. There may be a need for an extensive EEG to be done.
2024-09-05 02:33:37
1
todayIstayed :
THIS. I have PNES, and it's taken YEARS to hear that as a diagnosis. I had 1 doc who did the "ur just anxious and need to calm down" and 1 doc like yours. My current neuropsych FINALLY started helping
2024-07-19 16:54:50
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KayKayBabiee :
hun, all you need is one EEG to dictate whether or not ur seizures are ELECTRICAL & if ur EEG is normal than ITS PNES💯
2024-07-16 20:03:04
1
Megan :
Look up titration procedures for the meds and get the hell off of them!! I had meds with unaliving thoughts side effects and it was absolutely terrifying!!
2024-07-09 20:08:43
1
skitteee :
I get these usually back to back for a few hours at a time. probably from a combo of my MS and disgusting mental health. the only thing Ive been given that helps shorten them so far is diazepam
2024-06-17 15:03:21
1
VV the russian warrior :
have u had recorded epileptic brain activity or abnormal brain activity if so then that’s y, i have both epileptic and non epileptic seizures and am going through a similar situation as u, i’d love to message bout it
2024-06-15 12:13:52
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Frostbite Subzern :
I hate that you needed to specify the psychogenic thing... This world is so FUCKED.
2024-06-14 18:00:44
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BabyFox1119 :
oh my gosh, if my neuro tells me one more time I just need to be "less stressed". I have adrenergic POTS and it doesn't matter if mentally you aren't "stressed" your body will still hormone dump
2024-06-14 17:13:46
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texasheart :
no experience with PNES or seizures but ton of experience with bad doctor please if you can get a second opinion even better if you can find a PNES specialist
2024-06-14 03:44:01
1
sarah :
yeah I had doctors say its anxiety 🙃 but I am still having seizures. 🥺 I get so mad when doctors don't understand. I understand your frustration
2024-06-14 01:40:10
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Annie’s Hubble Creations :
I am so sorry you had to deal with this! I had to deal with something similar and it’s like they say things like “oh just bare it for a while and those will go away” (1/2)
2024-06-14 00:01:40
1
Patricia :
I'm familiar with Clonazepam which helps with Seizures & also anxiety/mental distress. So taking it may help that psych trigger event from happening
2024-06-13 12:41:09
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💚Ms.Bliss💚 :
my seizure like episodes were ruled out as epilepsy, it's actually dystonic storms triggered by the nerve damage from POTs.
2024-06-11 18:06:08
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Aimee :
My neurologist said there’s now called functional . I have had a 4 day eeg but we haven’t had results of epileptic yet , but they think maybe they’re functional . That’s the name he called it
2024-06-11 13:49:15
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♾️guess♾️ :
is it possible to get a second medical opinion?
2024-06-11 09:12:18
1
Sage :
I feel for you deeply with this post sending hugs and love ❤️
2024-06-11 05:59:23
1
amytufanomoran :
I don’t have the answers or know enough about any of this—but get off those meds!!! You know enough to know that they aren’t helping. I know you can refuse meds, but I’m pretty sure you can also…
2024-06-11 04:15:25
1
Alethi :
serotonin overload?
2024-06-10 22:10:37
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butterflypunk557 :
👏👏so annoying.
2024-06-10 22:02:59
1
Sparklemommaz :
I’ve unfortunately had the experience of seeking out the head neurologist for our local hospital because my awesome integrative neuro had to quit her practice to deal with a brain tumor.
2024-12-04 01:24:45
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unicornshark31 :
I been told this for 4 years now “It’s either therapy or anxiety or depression medicine for your case.” Therapy helps so much but when you have 20-30 pnes a month it is so frustrating 🥺
2024-10-30 03:34:34
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Blue :
So, my understanding is that PNES is an outdated diagnostic term, and typically the diagnosis now is either NEAD or FND. That being said, refusing to give you any diagnosis because he doesn’t agree
2024-08-15 20:14:39
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The Favorite Goddess :
Nope new dr
2024-06-25 01:48:27
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Fang🧩🌀 :
Going through the exact same thing expect my “treatment” is just going to therapy which I’ve been doing since I was 6 and they’ve only gotten worse
2024-06-21 17:53:22
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Bethany Redd61 :
“Research” = Googling. When can’t we just say, “searching”? “I’ve done a lot of searching.”
2024-06-20 04:49:15
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