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#1 | |||
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Magnate
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I mainly hear from folks who had O.N. pre-diagnosis or at diagnosis... what I'm curious about is how common is it for O.N. to develop later on with MS?
Have any of you been diagnosed with O.N. well into the disease course? I'd be interested to hear your stories.
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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"Thanks for this!" says: | Lady (10-04-2011) |
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#2 | |||
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In Remembrance
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I've only had ON once and it was before and during my 2nd big exacerbation, in 1992. It went away after IVSM for three days. I never had it again, to this day (knock on wood)
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#3 | |||
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Elder
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I was diagnosed in 1997 and had my first and hopefully only episode of ON 2 months ago. Like Sally it went away after 3 treatments of IVSM. I have my 2 month check up next Tuesday. Coincidently I found out I had a cataract ready to be removed which was a big cause of my very blurry vision.
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#4 | |||
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Magnate
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Quote:
I have never had ON. If I was to develop ON now it would be well into the disease course for me. I'm sure I could develop ON just like anyone else with this disease --- I just hope it doesn't happen ![]()
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Dx RRMS 1984 |
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#5 | |||
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Magnate
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Quote:
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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#6 | |||
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Elder
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I get ON all the time! its outrageous and I wish it would leave me alone. its one of my triggers for flares, and it is destroying what little vision I have.
I have lesions on BOTH optic nerves, so they behave quite badly when I am stressed, or over heated, or tired. it is said that the optic nerve is covered in that same fatty mylin as the brain, and MS likes that stuff. The GI tract is also covered in a fatty substance that is similar to mylin and MS frequently can attack the GI tract and create all sorts of issues. I have alot of tummy troubles too. I hope you never have to experience ON. its frequently one of the first or hallmark sx that someone has MS to start with.
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RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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#7 | |||
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Magnate
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I've heard O.N. is painful - is this always the case?
I got curious about O.N. because the last 2 days, I've had a spot in my left field of vision that's 'gray' or blurry. When I try to look with that left eye only, I see things very dulled/gray (like black text on white looks gray and almost like pencil that someone's erased parts of). I was told my optic nerves looked to be in great shape, so now I'm concerned that perhaps I've since developed (or started to develop) O.N. This isn't painful, and not completely encompassing the entire eye. (just noted - when I look at a white wall, the spot looks more like what you'd see if you were to stare at a bright light too long.. only it doesn't disappear). Luckily I'm already lined up this month to see my GP... and review my last MRI scans, or discuss my next neuro appointment to do so. I'll have to bring this to her attention if it doesn't subside. I guess it's off to the ER if it doesn't improve. Sigh.... ![]() Stinking MS! .... granted this may not be MS alone. I had a wicked vicious headache yesterday (probably more in line with migraine) so I'm wondering if the eye issue may be more migraine related. The headache was across the forehead, but more pronounced on the left (as is my neuralgia in general).
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX Last edited by dmplaura; 10-01-2011 at 04:49 PM. Reason: Added some extra info. |
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#8 | |||
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Elder
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Can you get in to see an ophthalmologist? Any sudden change in eyesight is worrisome. I don't take chances with my eyeballs. I only have two, and I like 'em both.
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* * * **My flesh and my heart may fail, but God is the strength of my heart and my portion forever. (Psalm 73:26) |
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#9 | |||
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Magnate
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I'm not positive, I'll give my GP a call on Monday to ask about this situation... I'm also not sure if an Ophthalmologist here (NB, Canada) requires a referral... I know many specialists do.
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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"Thanks for this!" says: |
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#10 | |||
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Elder
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I had terrible pain with my one episode. I just wanted my husband to hold me and make it all go away.
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