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#1 | |||
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Elder
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can someone help me sort this out?
one of my MDs is suggesting that I may have a form of Devics disease, and not a true MS. 1. I hiccup all the time. 2. I have frequent unrelenting bouts of nausea. 3. many of my attacks occur on my optic nerve 4. I am positive for Sjoghrens. im confused. My ANA is negative, my spinal MRI years ago was negative, but I do have increasing sx of spinal involvement such as the severe ms hug, and the hiccups. The eye surgeon said that MS that constantly attacks the optic nerve is not a "true MS" but would be a variant of the disease called "devics" Anyone care to help me shed some light on this?
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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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"Thanks for this!" says: | Debbie D (02-28-2012), Twinkletoes (02-29-2012) |
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#2 | |||
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Wise Elder
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I think Devic's generally just effects the eyes and the episodes are far more intense than just ON. It could be that you have both MS and Devic's. I also think that in many Devic's patients their MRIs are clear. I'll have to check with one of my friends as her dad has Devic's. I'll get back to you.
In the meantime, hang in there and I've been keeping you in my prayers. ![]() |
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#3 | |||
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In Remembrance
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Sounds like it is quite possible. Since the symptoms are very much the same as MS, except for the repeated and ongoing ON/blindness, in Devics.
The treatments are the same as well, such as frequent use of IV steroids and other Immune suppressents to relieve inflamation. Maybe you need another dose of IVSM? ![]()
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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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#4 | |||
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Magnate
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Dejibo,
Devics is known as Neuromyelitis Optica (NMO). This link will explain the differences between NMO and MS: http://www.myelitis.org/nmo.htm http://www.guthyjacksonfoundation.or...-need-to-know/ There is a blood test for NMO that your neuro can order...Antibody NMO-IgG. This is done through the Mayo Clinic. BTW: I have had the blood test.
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Dx RRMS 1984 |
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#5 | |||
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Magnate
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Clarification: The blood work is sent to the Mayo Clinic. You do not need to go to the Mayo Clinic.
__________________
Dx RRMS 1984 |
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"Thanks for this!" says: | Dejibo (02-25-2012) |
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#6 | |||
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Elder
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I followed the link over to the TM message board, which includes great information about Devics disease. Its slow reading but its fascinating to research it.
They spoke of how at least 1/4 of patients have some other underlying disease like lyme, lupus sjoghrens (which I have) or other things. I hate this disease. Have I said that lately? I really hate this. I just want to wake up and find out it was all a bad dream.
__________________
RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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"Thanks for this!" says: |
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#7 | |||
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Magnate
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Dejibo,
I am glad you have found the links helpful. If you are concerned about NMO ask for the bloodtest and ask questions on the message boards from the links. There are some informative people on there who could offer you some advice and information.
__________________
Dx RRMS 1984 |
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"Thanks for this!" says: | SallyC (02-26-2012) |
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#8 | |||
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Elder
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Wow Deb that would be so strange after all of this time if you'd definitely have a different dx...I remember many times you questioning your MS dx...hugs & I sure hope you get some answers real soon.
__________________
Instant Karma's gonna get you-gonna knock you right in the head...John Lennon |
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"Thanks for this!" says: | Dejibo (02-29-2012) |
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