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Anxiety about Intermittent Vision Loss With Trigeminal Neuralgia

Brain & Nervous System | Last Active: Nov 19 5:22pm | Replies (8)
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@SusanEllen66

Long story short. I have several autoimmune issues, a rare eye disease, and now an unknown issue.
Every single test I have had over the last 2 weeks including MRI, CT, ECG, blood work, urine, neurological tests (EEG, VNG) are perfect.

I lost the vision in my left eye 3 times two weeks ago. It was accompanied by a headache, sore scalp and other things.
The initial thought was that I have an inflammation in my temporal artery, or I had a small stroke.

Anxiety is building because I feel like no one believes me. All the doctors are giving me the “I don’t know” look.
Thankfully I am having a biopsy done on my artery tomorrow. This eye surgeon said she is doing it for my benefit…hmm

I’m feeling foolish, and resentful. On paper I am a picture of perfect health.

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Replies to "Long story short. I have several autoimmune issues, a rare eye disease, and now an unknown..."
Colleen Young, Connect Director | @colleenyoung | Aug 13, 2022

Hi Susan, I can imagine that you're very worried. Losing one's eyesight is a scary thought. I know that you've written before about double vision and other sight issues related to damage from a cataract surgery and possibly autoimmune issues.

Coincidentally, @agirlthing1977 started a new discussion that you may relate to here:
- Double Vision and Autoimmune Diseases like MG: Can anyone relate? https://connect.mayoclinic.org/discussion/double-vison/

Do you and your doctor think that this new vision loss is related to your diagnosis of polyarteritis nodosa, ophthalmic branch trigeminal neuralgia (TN) or possibly something new? Has the vision loss returned?

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nicdale | @nicdale | Nov 19 2:23am

I have the same thing! Keep going!
I'll let you know if I get an update.

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