Re: I was going to ask Russ, is NAION truly permanent? So Jo hope for any improvement? My own doctor told me that there would be no improve ment but it won¡¯t get worse. Surely there is hope?
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I live in Pennsylvania USA
Thank you Diane, where do you live??
-------- Original message --------
Date: 15/12/2022 13:09 (GMT+00:00)
Subject: Re: [NAION] I was going to ask Russ, is NAION truly permanent? So Jo hope for any improvement? My own doctor told me that there would be no improve ment but it won¡¯t get worse. Surely there is hope?
Hi Caroline
Sorry you have the need to be part of this group but happy to meet you.? I have had two NAION one each eye. The first one was a dot that eventually disappeared.? The second was severe and I have loss of most sight in that eye.? My ophthalmologist
immediately put me on steroids for 3 months.? This
Helped me by going from 400/20 to 125/20 in that eye. ?
I just saw the neuro ophthalmologist on Friday last week.? Nothing more can be done. ?
Adjusting is the key
I send prayers for you ?
Hello All
I've recently joined this group, I would love to hear your stories of how Naion affects you and where you live. I belong to a Facebook group which is very good and has a lot of helpful information. Prof Sohan Hayreh has written a lot of papers
on Naion and done a lot of research. His findings are very interesting. He believes if you start a high dose of steroids within 14 days of the onset of Naion it will help stabilise the condition. About me, my name is Caroline,? I've in South Wales? UK and
in 2019 I had my first Naion attack and lost most of my sight in my right eye. Then 6 weeks later I had another attack in my left eye, luckily I can still do most things, but I am unable to drive any longer. My depth perception is poor, my sight feels slightly
out of focus and I feel nauseous if I am in a shop with fluorescent lights. I was told this would eventually improve as my eyes adjusted. But no improvement at the moment. So I am classed? as bi-lateral. I feel grateful for the sight I have! ??
Kind regards?
Caroline
-------- Original message --------
From: Danette Janickovic <Mommyflyz@...>
Date: 15/12/2022 10:42 (GMT+00:00)
Subject: Re: [NAION] I was going to ask Russ, is NAION truly permanent? So Jo hope for any improvement? My own doctor told me that there would be no improve ment but it won¡¯t get worse. Surely there is hope?
I was 49, in 2020. Diagnosed with optic neuritis and while NAION was discussed my doctor thought I was too young for NAION. Guess I fooled him....
I was 57, now 62.? I would not say ¡°optimum¡± age exactly¡ªI¡¯d rather get it at age 135, if I had a choice. ??
From:
[email protected] <[email protected]>
On Behalf Of Chiarina Blake
Sent: Wednesday, December 14, 2022 7:41 PM
To: [email protected]
Subject: Re: [NAION] I was going to ask Russ, is NAION truly permanent? So Jo hope for any improvement? My own doctor told me that there would be no improvement but it won¡¯t get worse. Surely there is hope?
Hi there.? I was 59 when I got hit with this condition.? I got it because of a fall in blood pressure due to sleep apena.??
Could I just ask our ages on here. There seems to be some research that the optimum age for NIAION is 57 and if you have had one eye affected there¡¯s a 30-40% chance that within 2 years there¡¯s likely to be a
attack in the other eye. But after that there¡¯s not much evidence of further attacks
Thanks Marc. I feel sad about it all. My problem is that my NAION happened in my only good functioning eye.?
On Wed, 14 Dec 2022 at 2:36 pm, Marc Gold <marcgold@...> wrote:
No hope. No cases of spontaneous remission.?
On the other hand I have lived with NAION for 11 years and after the first month of being fearful, it has hardly affected my life since then. The most serious?side effect for me has been that it has been slightly more difficult to light
a roach (joint).
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Enjoy every moment,
Diane
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Enjoy every moment,
Diane
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