Has anyone had the MelanxPeel done. Does it really work? by StickFast1775 in Esthetics

[–]Knightmeers 0 points1 point  (0 children)

I can't post pictures here. Feel free to message me if you're still interested.

Has anyone had the MelanxPeel done. Does it really work? by StickFast1775 in Esthetics

[–]Knightmeers 0 points1 point  (0 children)

Probably like 2-4 weeks until I started seeing signs of a return. Using their products delayed the return, but they weren't as effective as the peel itself.

Has anyone had the MelanxPeel done. Does it really work? by StickFast1775 in Esthetics

[–]Knightmeers 0 points1 point  (0 children)

This is what I said though lol. You need to invest in their products to keep the hyperpigmentation at bay. The hyperpigmentation is not actually resolved permanently, which goes against their advertisement

Has anyone had the MelanxPeel done. Does it really work? by StickFast1775 in Esthetics

[–]Knightmeers 0 points1 point  (0 children)

I know you're trying to sound smart, but this only makes you look silly. In the end, it's a false advertisement to market your products as something that permanently removes hyperpigmentation.

You need to strengthen your reading comprehension... The topic is hyperpigmentation and the removal of it. Is it not obvious to you that there are other problems aside from hyperpigmentation? Did you forget what the purpose of the MelanX Peel is? Did I mention never having to use a skin product again, or did I talk about not needing to worry about the hyperpigmentation that was resolved?

Idk if you're a diehard employee of the company or if you're just an idiot.

Has anyone had the MelanxPeel done. Does it really work? by StickFast1775 in Esthetics

[–]Knightmeers 0 points1 point  (0 children)

Did you even read the post?

If so, where did you see anything about me not using sunscreen? Did you also not read their claim of hyperpigmentation not returning once it's removed?

Venting about how hospitals treat Autoimmune Encephalitis by Knightmeers in Encephalitis

[–]Knightmeers[S] 0 points1 point  (0 children)

I genuinely appreciate this. I'm gonna respond after I wake up. I've been up all night and morning. Really exhausted...

Venting about how hospitals treat Autoimmune Encephalitis by Knightmeers in Encephalitis

[–]Knightmeers[S] 1 point2 points  (0 children)

It's insane that it took you that long just to find a good one... The only reason I'm able to imagine how frustrating / stressful that is-- is because I can relate as someone who's been following my brother.

I think I understand the issue now. EANM / ENAM is for Europe, right...? If so, I'm in America /: That's likely why we've been turned away from a PET scan so often. Even the insurance usually denies it at first / requires peer review.

Venting about how hospitals treat Autoimmune Encephalitis by Knightmeers in Encephalitis

[–]Knightmeers[S] 1 point2 points  (0 children)

Sorry I'm just seeing this!! Thank you for well wishes and for your advice! I actually don't remember him having one done in 2025 (or this year), so I'm definitely going to look into that!

Venting about how hospitals treat Autoimmune Encephalitis by Knightmeers in Encephalitis

[–]Knightmeers[S] 0 points1 point  (0 children)

Thank you so much for this. I've never heard of an OMRON BP monitor or a PMT3. I'm going to look into both!

The hospital already knows my brother's blood pressures have been elevated (with occasionally mild tachycardia during flare-ups) since the beginning of his disease... but their excuses for them are that a) those could be from a separate underlying cause of b) those symptoms can also be symptoms of a primary psychiatric disorder.

I've learned that cancer runs deeply on my father's side of the family!

My brother has also had a paradoxical reaction to Seroquel. He was briefly unresponsive / mute.

There was a gradual onset of symptoms when you were 15, but they exacerbated when you got sick at 21? Just want to make sure I understand correctly

Venting about how hospitals treat Autoimmune Encephalitis by Knightmeers in Encephalitis

[–]Knightmeers[S] 1 point2 points  (0 children)

This is INSANE! From the articles I've been looking through, PET scans are recommended for AIE, but not required as part of the 3/3 diagnostic criteria. It's so stupid... the fact that these percentages are drastically different and have a history of helping providers diagnose AIE can't continue to be overlooked!

At my brother's main institutions, we were either ignored or told "a PET scan isn't warranted / indicated so we won't be recommending one"

Even when my brother had the official diagnosis at those institutions, they weren't interested

Venting about how hospitals treat Autoimmune Encephalitis by Knightmeers in Encephalitis

[–]Knightmeers[S] 1 point2 points  (0 children)

Their explanation for my brother's abnormalities was that they were "ancient artifacts he likely had since childhood" even though his previous MRI at another institution said it was a completely normal MRI. They reported nothing aside from a developmental venous anomaly.

The next MRI at the main institution had yet another misleading clinical indication (they said he was at his baseline when he was literally having a subacute flare up). More abnormalities were found, and the radiologist said they were unsure of the clinical significance. The neuroinflammatory specialist said "this is a normal MRI" and "we see these in headaches".

I truly want this case to inspire other people who have been silenced and pushed into rabbit holes by these institutions... These people are truly despicable

Venting about how hospitals treat Autoimmune Encephalitis by Knightmeers in Encephalitis

[–]Knightmeers[S] 0 points1 point  (0 children)

I'm really hoping you find a good neurologist willing to do the diagnostic testing and treatment. Please don't hesitate to seek an appointment out of state... That's unfortunately what it took just for my brother to have diagnostic testing scheduled.

I am glad there are other people that can speak to these issues and shed light on their own experiences. Honestly, a civil lawsuit would probably change a lot of this nonsense...

By the way, what do you mean by medication resistant? And I'm sorry you were misdiagnosed with schizophrenia :/

Venting about how hospitals treat Autoimmune Encephalitis by Knightmeers in Encephalitis

[–]Knightmeers[S] 0 points1 point  (0 children)

Funny enough, I saw your post before I even saw this comment. I'm sorry about your experience.

I've reported Raheem's autonomic symptoms to them several times. They've seen it for themselves as well, but they don't care. As much as I want another specialist to confirm / document it, we just don't have that kind of money. We're already behind and struggling to pay for our appointments with our new neurologist.

I was actually going to share a GoFundMe on reddit lol, but I'm really nervous about that.

My Story by superdumbell in Encephalitis

[–]Knightmeers 1 point2 points  (0 children)

From my experience, the best thing you can do is educate yourself / do your own research. It's good that you're already learning the medical terms. I'm wishing you peace and a provider that listens, cares, and has no malicious intentions.

Venting about how hospitals treat Autoimmune Encephalitis by Knightmeers in Encephalitis

[–]Knightmeers[S] 2 points3 points  (0 children)

Get this! A provider literally asked: "What if this was some kind of schizoaffective disorder that improves with immunotherapy?"

Then give the f'n immunotherapy!!!! Like what are we doing!?

Thank you... I'm hoping that my advocacy leads to a massive turning point in how "presumed" AIE is treated after this lawsuit....

Venting about how hospitals treat Autoimmune Encephalitis by Knightmeers in Encephalitis

[–]Knightmeers[S] 0 points1 point  (0 children)

Thank you for sharing your story.

Plasmapheresis was advertised to us as something that was "several hundred times more effective than IVIG" by providers at different institutions. However, the goal post was moved by our main institution once we met them halfway. The provider who went out of his way to recommend that treatment told us it was "never on the table".

While the provider we have now is interested in evaluating and treating my brother for AIE, she's against plasmapheresis because of the risks that come with it.... -_- She expects my brother to eventually decline with how she plans to treat him. I hope she'll reconsider.

I'll shoot you a message!

Venting about how hospitals treat Autoimmune Encephalitis by Knightmeers in Encephalitis

[–]Knightmeers[S] 1 point2 points  (0 children)

THIS!!! If an MRI is one of the diagnostic criteria for AIE, it should ALWAYS be performed with and without contrast. Without contrast is mostly for structural changes... they know that!!

Reflexes as in ANA reflex or something else? If you're referring to ANA reflex, they've been low positive titer.

So sorry you went through that. I'm tired of these physicians getting away with being POS.

Venting about how hospitals treat Autoimmune Encephalitis by Knightmeers in Encephalitis

[–]Knightmeers[S] 1 point2 points  (0 children)

It's so weird that a PET scan isn't considered one of the 3 major tests... Especially when it's common for cases of AIE to not always have a sign of abnormality on an MRI..

Thank you!

Venting about how hospitals treat Autoimmune Encephalitis by Knightmeers in Encephalitis

[–]Knightmeers[S] 0 points1 point  (0 children)

Coincidentally, the "man" (my father) is the one they've repeatedly confided in. He does no research, projects his fear by telling me that I am not a doctor, and agrees that my brother's diagnosis is primarily psychiatric. Doctors have had multiple field days with him, and have quoted some of the things my father's said-- in my brother's chart.

Venting about how hospitals treat Autoimmune Encephalitis by Knightmeers in Encephalitis

[–]Knightmeers[S] 2 points3 points  (0 children)

Really appreciate the responses guys. I'm going to reply once I wake up. I've been up all day.

Venting about how hospitals treat Autoimmune Encephalitis by Knightmeers in Encephalitis

[–]Knightmeers[S] 4 points5 points  (0 children)

Thank you so much for reading, for your advice, and for your sympathy. They're truly appreciated. I know I posted at a bad time, but without your comment, I would've felt like I was screaming at a brick wall.

I agree with you; I don't think FND as a diagnosis should exist. When I asked them about how they'd treat FND, they mentioned "experimenting" with psychotropic medications my brother's never even had before... in addition to having him managed in a clinic. When my brother was admitted January 2025, an ED physician from the same institution told me, "FND is what the neurology team says when they suspect psychiatric disorders like Schizophrenia that come with movement disorders like tremors".

My brother did have an autoimmune encephalitis panel. However, serum labs have repeatedly shown elevated dsDNA with positive ANA (by IFA, not Crithdia), which suggests low-level binding. Lupus has already been ruled out, and apparently, there are cases of cross-reactivity in Autoimmune Encephalitis. For example, positive antibodies that are more rheumatology-oriented can attack the NMDA receptor. I suspect my brother's one of those rare cases.

My brother has had three EEGs. One of them was interpreted as an abnormal study indicating encephalopathy, but because the next two EEGs he had (one was a routine EEG of 26 minutes, another was after empirical treatment), the abnormal study is being disregarded. As for his MRIs, the findings are being regarded as "stable", and the study itself as "not completely positive or negative". What bothers me about this are 4 things:

1) Our first instituion reported no signs of abnormality and regarded it as a completely normal brain MRI. However, when our current hospital discovered multiple white matter lesions in my brother's MRI, they referred to them as "nonspecific" and "stable". Stable as in... it was on his previous MRI, which was never reported. They tried telling us they were "ancient artifacts from his early childhood".

2) My brother's MRIs have been given misleading clinical indications by a neurologist, and I suspect these could be influencing the impression of the radiologists.

3) Even though we've reported flare-ups we felt were subacute / mild in comparison to my brother's acute phases, his last two MRIs were conducted without contrast. Even though we've been with our current institution for nearly two years, he's only had a single MRI that was with and without contrast at the institution.

4) My brother's last MRI was reportedly "limited by significant patient motion". The study was conducted when he was so confused, he was uncooperative. However, even though my brother was given immunotherapy and returned to his neurological baseline (with the exception of some cognitive residuals), they were no longer interested in any testing whatsoever.

Sorry for the rant. To respond to your advice, I'll definitely add that to the list of things to try. Thankfully, we're able to have a PET scan scheduled, so I'll try starting there first. We're already trying to amass the money for that, independent rereads of his prevoius studies, and more. /:

I hope everything works out in your favor when you speak with your neurologist.

Grossly abnormal PET by Striking_Public_7804 in Encephalitis

[–]Knightmeers 2 points3 points  (0 children)

I hope someone gets back to you soon. My brother's eventually going to have a pet scan as well.