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Eyes and Neuropathy

Eye Conditions | Last Active: Dec 23, 2023 | Replies (299)

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@rwinney

Hey there @bri85 - I'm so sorry you're struggling with all of these conditions and your eyes are giving you grief. I have been where you are, not with exact diagnosis but ultimately being diagnosed with Central sensitization syndrome. Prior was diagnosed at 41 with a corneal disease needing eye surgeries, then B12 levels were off causing small fiber neuropathy...blah, blah, blah.

I do feel for you especially at a younger age it seems to make everything that much more difficult . It's rotten to have your eyes affected but the key takeaway is that you've been told you're eyes are healthy so this is more central nervous system dysfunction. It's good to hear your doctor has a plan for you. My best advice is to stay positive find solace in the fact that your eyes are healthy it's just that they are annoying you right now. Try to think positive and take one day at a time. Have you tried ways of calming such as meditation distraction journaling or humor? I'm sending lots of positive vibes. Hold On tight you'll get through this! Are you scheduled for your first treatment yet?

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Replies to "Hey there @bri85 - I'm so sorry you're struggling with all of these conditions and your..."

What a precious reply. Thank you for taking the time to write this..

No treatment in sight. Dr has ordered IVIG but no idea what insurance will do. He’s asked me to pursue UCLA in the meantime for Plasma Exchange which is what I really need right now.

I still in Awe that my Dr really believe ALL of what I am going through is a post covid complication. To have a dormant auto immune disease come to a head and wreak havoc on your CNS and cause the grief that it has is almost incomprehensible. I am living a daily nightmare.

I am also so grateful to finally have some answers after 6 months of fighting and fighting for them. Over a hundred Dr visits. Every specialist.

And with answers we have hope to pursue treatments… I have faith it will all work out and that this current state is just the Lord pruning me for a better season! 💜