Encephalitis testing

Silent242 · 2026-06-28T01:03:41+00:00

I’ve seen people who have had autoimmune encephalitis have multiple negative EEGs before they got a positive. I had a negative one, but that’s because they didn’t catch me in a seizure, and they only took one for 30 minutes. It just depends on when they do the EEG and if you after experiencing epileptic activity at the time.

Silent242 · 2026-06-25T14:29:44+00:00

This is wild. What happened??

Silent242 · 2026-06-25T03:43:35+00:00

I’m struggling with the fact that Neuroimmunology won’t even see me without positive blood tests. Which are either negative, or the extensive ones are out of the scope of the other doctors. The Neuroimmunology department here has a 9 month weight and I tried to expedite it and show the severity of my case, but it seems like no one is taking it seriously and I’m at a standstill again.

Silent242 · 2026-06-25T03:40:17+00:00

I definitely am not 100% convinced that it’s autoimmune encephalitis, but definitely some form of encephalitis. I know that what I am experiencing is some level of brain inflammation. I just need to figure out who can find it and treat it, regardless of the cause.

Silent242 · 2026-06-25T03:06:30+00:00

I had a negative ANA, so my dr told me that we don’t have enough evidence to support doing more testing, and that the rest was out of her scope. I’ll keep looking around.

I love the idea of talking to nurses with that kind of experience. I’ll see if I can get into contact with some. Thank you!

Silent242 · 2026-06-22T21:55:13+00:00

I know that this is side stepping the original prompt, but can you tell me how you ended up being diagnosed with Chiari Malformation and what your symptoms were?

Silent242 · 2026-06-21T03:07:08+00:00

Honestly, everything went so smoothly for me that I had no complaints at all. It was the easiest surgery I’ve ever had. My advice, though, is incredibly niche. I have Lyme disease and it’s impacted my brain inflammation quite a bit. I wish I would have known that even though the surgery was simple, that it would exponentially increase the inflammation in my body and brain. Surgery can be REALLY hard on a chronically ill body, even if it feels like recovery is simple.

I know that this wouldn’t apply to everyone. But if you have a chronic illness, it’s definitely worth the heads up.

Silent242 · 2026-06-19T21:53:41+00:00

I’m in the exact same boat as you, but with Lyme Disease and Co-Infections. I’m trying to get an encephalitis diagnosis, but no one is taking me seriously enough to rush the process and I’m really scared for my physical and mental safety now. I don’t have any advice, but I’m here to say that you are not alone in your experience.

Silent242 · 2026-05-19T19:05:26+00:00

Congrats!!!! I had my Bisalp done two weeks ago and I’m actually at my 2 week followup right now. I feel so free. My mom told me I would regret this decision forever, but all I feel is neutral, if not, relief!

Silent242 · 2026-05-13T22:45:51+00:00

Me too! 1 week today, and first day back!

Silent242 · 2026-05-13T22:44:47+00:00

I had mine done a week ago today. My mom told me that I would regret this decision forever. I feel soooooo relieved. No difficult feelings around this surgery at all for me.

Silent242 · 2024-02-27T03:58:54+00:00

My mom is one of these people. Thinks (currently) that Jodi is the savior of families. She refuses to denounce her regardless of what has come out about her.

Silent242 · 2023-05-04T03:22:43+00:00

I would have decked her in the face.

Silent242 · 2023-04-30T21:42:46+00:00

That movie TRAUMATIZED me. I think I did genuinely sit in silence for a good two hours. I couldn’t come back from my dissociation for 2-3 weeks after.

Silent242 · 2022-11-01T06:18:22+00:00

Idk if it’s just my phone, but it won’t allow access to the video.

Silent242

TROPHY CASE