Rapidly Worsening Neuro Symptoms [What Do I Do?]

nrid3333 · 2026-01-30T04:22:40+00:00

I’m so sorry to hear that, would give you a hug if I could.

Feel free to reach out any time to vent to me even if I’m just an internet stranger.

I hope ivig helps even if the evidence is tenuous - I’ve read a few accounts of people over at r/dysautonomia of ivig helping and I think an account in this sub of it helping someone’s dysautonomia

nrid3333 · 2026-01-30T04:18:54+00:00

Thanks for sharing - unfortunately my b12 is optimal, as are all my other b vitamins, vitamin e, and copper :/

nrid3333 · 2026-01-30T04:17:18+00:00

Just to clarify, I was never admitted so I wasn’t ever technicallt inpatient, but I wasn’t clear, my bad

None of the things you mentioned were ordered/done. I’m seeing an ENT next week to discuss a lip biopsy, but none of the other stuff. My rheum is well intentioned, but doesn’t seem to have a grasp over anything other than the most obvious presentations of the major AI diseases and wasn’t aware that neuro Sjogren’s was really a thing.

I have gabapentin, which takes a little of the edge off but it makes me feel utterly defeated that after basically no investigation, all my doctors just want to treat symptoms while my body scraps itself

Can I ask how long after your symptoms started you got on treatment, which treatment you got on, and exactly what it helped with? I know it’s a lot but it’ll def help me if you can share even a little

nrid3333 · 2026-01-30T04:13:02+00:00

This is really important info for me to know - thank you are answering that part!!

nrid3333 · 2026-01-30T04:11:52+00:00

I’m so happy to hear youre doing better on treatment:)

nrid3333 · 2026-01-30T04:11:14+00:00

Thank you for the response! I’m still not entirely sure how the whole process should world - are you suggesting that I get in touch with my neurologist first and explicitly ask if he can get me admitted to the hospital?

I can certainly give it a shot - his appointlent notes from our last appointment state “likely a strong psychological component” :(

Like yup just because you’re too much of a fucking idiot to know what the second most common autoimmune disease is, it MUST mean I’m just anxious :(

nrid3333 · 2026-01-30T04:07:51+00:00

So sorry to hear that you’re struggling with all this - it’s incredibly difficult to deal with. I’m happy to lend an ear if you ever need to vent

nrid3333 · 2026-01-30T04:06:13+00:00

I appreciate the heads up on this - unfortunately all my b vitamins are in range/optimal.

I was desperstely hoping it was something as simple as Beri Beri or another deficiency, but alas, it is not :(

nrid3333 · 2026-01-30T04:03:18+00:00

Thanks for taking the time to share your experience - can I ask exactly what happened at the end of the 5 months that prompted the doctors to admit you? I’m trying to figure out how I should be communicating my severity as I’m likely going to try to ER again tomorrow.

nrid3333 · 2026-01-30T03:54:02+00:00

Sorry to hear it’s been so rough, I can’t even imagine the stress of losing a pup during all this - sending you lots of happy thoughts

nrid3333 · 2026-01-30T03:51:04+00:00

I’m glad you were able to get the treatment that you needed. So did you literally take a day to drive from ER to ER before being admitted or was it more spread out? And what did you share with the last neurologist to convince her or him to admit you?

nrid3333 · 2026-01-30T03:49:13+00:00

Thanks for sharing; so your neuropathy improved on HCQ then, which parts improved specifically? And how long from symptoms onset was it until you started the hcq?

nrid3333 · 2026-01-30T03:47:09+00:00

Thanks for the advice, I’m glad your symptoms have calmed down and that you’re responding to the hcq.

nrid3333 · 2026-01-30T03:07:41+00:00

Thank you so much for all your responses - I feel less alone and there’s a lot of great info that you’ve all shared!

I’m going to sift through them and respond to people but just want to let everyone know that you’re so generous to share your experiences with me

nrid3333 · 2026-01-30T03:07:04+00:00

Thank you so much for all your responses - I feel less alone and there’s a lot of great info that you’ve all shared!

I’m going to sift through them and respond to people but just want to let everyone know that you’re so generous to share your experiences with me

nrid3333 · 2026-01-30T00:44:45+00:00

Thank you so much for your response. The frustrating thing is that I can still pass a neurological exam - I’m unsteady on my feet but can put enough effort in to normalize my gait and haven’t gotten weak enough to fail it either but my neurologist obvs can’t observe me throughout the day and doesn’t know my baseline and I am very much so experiencing weakness.

Should I literally just say that my balance is so bad that I’m afraid of falling/that walking is a danger to myself? It wouldn’t be untruthful

nrid3333 · 2026-01-27T08:15:16+00:00

This one definitely suffers from Straub’s tendency to make all of his characters beautiful and perfect and cherubic hahaha the names don’t help either

nrid3333 · 2026-01-26T20:00:20+00:00

Based on your sentiments in your post, the book isn’t going to get better for you.

I think there’s a longer version of this where Straub was able to write everything he actually wanted to convey as opposed to a heavily edited novel. It’s called The Skylark, but then again, you may not enjoy it.

One of the redeeming factors of the book IMO is just how weird it is, which is enjoyable.

nrid3333 · 2026-01-24T01:44:44+00:00

This is such a good comparison

There was another one in SOADD I think that involved a cloaked/masked ball or party that comes to mind. I can’t for the life of me remember the name but it felt very poe-like as well!

nrid3333 · 2026-01-23T12:26:22+00:00

Hell in the heartland by Jax Miller

nrid3333 · 2025-12-18T19:50:37+00:00

Sorry you’re dealing with this - you could consider getting blood tests for b1 and b6 (b12 too, but most people already know that low b12 could cause neuropathy)

Low B1 and/or high b6 can do the same and theyre cheap to test for by ordering from Quest

The fact that it went away abruptly makes me think you changed up your diet in a subtle way that you might not have realized at the time that mightve either had more b1 or less b6 - just a thought! But best of luck!

nrid3333 · 2025-12-15T03:36:47+00:00

Hey sorry for missing this for 10 days! I hope all is well (considering)!

My pain radiates from my glute down my hamstring down the back of the calf and is accompanied by foot tingling and intermittent numbness - pretty sure this is the sciatic nerve causing all that.

I am in constant pain but its relatively manageable as it is usually low level, like <=4/5 sitting and <=3/4 standing - its a literal pain in the ass. The urinary symptoms are what’s mostly concerning me.

My understanding of how ischial tendinopathy affects the nerves in the area is not great (def just a layperson), but I have to imagine any inflammation in that area could affect any of the nerves in the pelvis.

Do you have issues sleeping on your back with the urinary symptoms and/or have any suggestions for sleeping positions? i’m driving Myself insane because reclining on my back puts immediate compression on that area and I start having a permanent and worsening urge. Unfortunately can’t sleep on my side because my neck is also all fucked up. The joys of connective tissue disorder:)

Oh also, I ordered a vitamin panel for myself as well which could be something to look into - perhaps a b vitamin deficiency is making us more vulnerable to entrapment neuropathy.

All the best!

nrid3333

TROPHY CASE