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Eyes and Neuropathy

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

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@harley22

I have CIDP and have no luck from any of the neurologists I’ve been to.
I’ve had so many tests,and the nerve biopsy showed there was demyelinization of the nerves, but no reason as to why.
I am slowly getting worse, and my eyes especially.
Besides having dry eyes, the effect of sunlight is painful.
My pupils don’t react to light at all which is the reason they are so light sensitive.
My past eye docs test them in the office and tell me I’m good,when I know I’m not.
I do have an appt in 2 weeks with a new opthomologist, but I was so surprised to read your symptoms and mine are similar.
I never wore glasses until few years ago, and just for reading.
I attributed it to age, but now I realize how bad my eyes are.

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Replies to "I have CIDP and have no luck from any of the neurologists I’ve been to. I’ve..."

Hello @harley22. Welcome to the conversation. I believe you are responding to me @rwinney? I have read some of your posts and do have heartfelt sympathy for your CIDP condition. How have IVig treatments worked out for you? I'd like to know. What a miserable time of things from body to eyes. It gets confusing to differentiate between causes of age or diagnosis. I never understood, nor did my opthemologist or neuro-opthemologist, why my eyes were so light sensitive. It had been blamed on scar tissue from my surgeries for 7 years. I began cross researching and understanding, since my Small Fiber Polyneuropathy diagnosis, that nerve damage, is nerve damage, and in my case and probably yours, it affects many parts of our bodies. including our eyes. There does not seem to be a way out other than what we adjust in our daily lives to compensate. For my photophobia I wear baseball hats, different shades of sunglasses according to light situations, car visor down, lights and lamps dimmed or altered, etc...Dry eye....well, drops, warm wash clothes, avoid fans, wind, air conditioners.....blah, blah, blah! What can we do, right? It stinks but, we must prevail and keep fighting as best we know how. I wish you peace and comfort.
Rachel

Hello, I am probably the last to know this but just did a search to see if there is a neuro-ophthalmology specialty and there is! Sounds like that would be who you, myself and those of us with these symptoms should see. All the best, Sunny