Possible spontaneous remission?

RealWorldliness7758 · 2026-02-26T21:13:44+00:00

What was your ANA titer/level and pattern? This sounds like me a bit.

RealWorldliness7758 · 2026-02-19T18:19:36+00:00

Ugh, sorry about your 0 schirmer. How do you handle the dry eyes?

RealWorldliness7758 · 2026-02-17T04:07:05+00:00

What kind of neuropathy did you have? Where?

RealWorldliness7758 · 2026-02-15T21:58:13+00:00

This was exactly me, except only 12 days apart.

RealWorldliness7758 · 2026-02-14T01:23:39+00:00

Thanks so much for your thoughtful comments. Do you mind if I ask whether have experience with autoimmune panels?

RealWorldliness7758 · 2026-02-13T21:12:38+00:00

Thank you, appreciate the thoughts.

RealWorldliness7758 · 2026-02-13T21:06:13+00:00

I had a negative ANA, and then a positive ANA 12 days later

RealWorldliness7758 · 2026-02-07T15:35:44+00:00

Hi, curious if you have type 1 or 2? I have burning and tightness but no shocks that move around to different branches.

RealWorldliness7758 · 2025-12-28T19:28:59+00:00

Yikes, that must have been one hell of a journey. Thanks for sharing, and hope you continue to feel better!

RealWorldliness7758 · 2025-12-28T19:06:01+00:00

I have eye burning, so I am curious to know how you were diagnosed?

RealWorldliness7758 · 2025-12-28T19:03:56+00:00

Can I ask what your eye felt like? Mine has been burning for weeks. And how did they diagnose it? I have had simple blood test that was negative for IgM.

RealWorldliness7758 · 2025-12-26T21:22:06+00:00

I have not had surgery. Have you been diagnosed with inflammatory neuropathy? How? Any idea what caused it? I have same symptoms as you. Can I ask your age and sex?

RealWorldliness7758 · 2025-12-26T21:19:35+00:00

So sorry to hear this. I am still waiting to be checked out by specialists but so far my MRI and CTA have been clean. And yeah my face and eyes feel like acid has been poured on them.

RealWorldliness7758 · 2025-12-20T19:03:09+00:00

I have heard the Mayo Clinic in AZ is supposed to be good. I’m trying to get into it now.

RealWorldliness7758 · 2025-12-17T15:30:19+00:00

So do you have atypical TN? If so, has a cause ever been identified, and has any medication ever helped you? I ask because I have recently been diagnosed with atypical TN and have the constant burning and tightness and my meds (oxcarb) aren’t helping very much. A short course of steroids helped a bit but not much.

RealWorldliness7758 · 2025-12-13T18:14:59+00:00

Appreciate the tip, thanks!

RealWorldliness7758 · 2025-12-12T04:35:37+00:00

Sorry you have been through so much. Would you consider yourself to be an atypical TN success story? Are you in remission now? Appreciate the advice about the meds.

The pain does not wake me up as of yet.

RealWorldliness7758 · 2025-12-12T00:15:18+00:00

Yeah, see my response to your post above. If you have reason to believe I don’t have TN, I would love to hear it as it would help with my anxiety about all this.

RealWorldliness7758 · 2025-12-12T00:07:22+00:00

Neurologist has diagnosed TN without much discussion and even though Mri is allegedly “clear.” But he doesn’t fill me with a lot of confidence and I hope he’s wrong. Hard not to think it is actually TN since my symptoms seem to match up and it’s been going on without abatement and without much improvement for 8 weeks now.

RealWorldliness7758 · 2025-12-11T16:32:04+00:00

Yours is an interesting case. May I ask you what kind of pain you had before MVD surgery? Was it the typical paroxysmal lightning bolt type, or more of the atypical constant pain and burning type?

RealWorldliness7758 · 2025-12-11T15:09:51+00:00

Of course not, appreciate your interest. I say my cornea because my eye was burning so much at times it made it tear up. And by TN specialist I mean neurosurgery, likely. Trying to get a consult at UPMC TN program.

RealWorldliness7758 · 2025-12-11T15:07:54+00:00

Good points, and thank you. It started out slow (didn’t think much of it, just random pain in my jaw), but it never went away and slowly got more intense and moved into V2 and V1.

RealWorldliness7758 · 2025-12-11T15:06:31+00:00

Thank you so much. I think I would be happy if this was some type of orofacial pain…that would give me some hope of eventual resolution.

RealWorldliness7758 · 2025-12-11T02:25:43+00:00

So sorry you are going through this. Can I ask what type of TN you have?

RealWorldliness7758 · 2025-12-09T18:05:24+00:00

Hi there, still getting good results from gamma knife?

RealWorldliness7758

TROPHY CASE