I was wondering of anyone knew an answer to this.
I was diagnosed with MS four years ago. I went in for a follow-up and out of the blue, my Neurologist says, "I don't think you have MS!" I about lost it....well, I did. I asked him what he thought was wrong and he said, "I think you might have Neuromylitis Optica". Short term, Devics Disease. He wrote it down and left the room.
I looked it up on my phone (thank GOD for mobile internet, right?) I was devistated at first. Then, I realized, I didn't fit the description, really. Normally Decvis doesn't show lesions on the brain and if it does, it's not consistant with MS lesions, which I have.
At first, I had Optic Neuritis. The Opthamologist could see it in the light, along with everyone else who looked. I was completely blind in my right eye for two months. My MRI at that point was normal, but I had complained of other things. After feeling some weird sensations, I went back and he ordered another MRI, which showed lesions, consistant with MS and was then diagnosed.
I have had an MRI every year, which show's new lesions.
I got my Neurology report the other day, which states:
I am questioning the Multiple Sclerosis diagnosis. Patient has very few lesions for having been diagnosed for four years (I have 6 total) about 1-2 per year. I am beginning to wonder if this patient has Neuromylitis Optica. It is unclear weather she has Multiple Sclerosis or Neuromylitis Optica at this time.
I am having her do a NMO IgG Titer
MRI of brain and spine, with and without contrast
Then we will discuss findings.
WHAT?!?! I thought you could have MS with two lesions and a clinical episode or two!!!! I also thought that you could have very few lesions for years or NO new ones, ever and still have MS....I'm lost and confused. I'll keep updates as I know them. My MRI is tomorrow and I won't get the other results for about two weeks. So I am sitting here wondering. I think basically if I don't have Devics Disease, then it must still be MS? That's what it sounds like. Either way, if it's neither, I hope he figures it out. I think he may just be ruling out other things, but still, the lesion thing makes me question....BTW, a friend of mine said, "It sounds like he just went to a conference or something on this". When I questioned his nurse about this yesterday, as they drew blood. He went to one last week. Hmmmm.....
Thank's for the rant of mine and the reading eyes. Any help/info would be appreciated...
I was diagnosed with MS four years ago. I went in for a follow-up and out of the blue, my Neurologist says, "I don't think you have MS!" I about lost it....well, I did. I asked him what he thought was wrong and he said, "I think you might have Neuromylitis Optica". Short term, Devics Disease. He wrote it down and left the room.
I looked it up on my phone (thank GOD for mobile internet, right?) I was devistated at first. Then, I realized, I didn't fit the description, really. Normally Decvis doesn't show lesions on the brain and if it does, it's not consistant with MS lesions, which I have.
At first, I had Optic Neuritis. The Opthamologist could see it in the light, along with everyone else who looked. I was completely blind in my right eye for two months. My MRI at that point was normal, but I had complained of other things. After feeling some weird sensations, I went back and he ordered another MRI, which showed lesions, consistant with MS and was then diagnosed.
I have had an MRI every year, which show's new lesions.
I got my Neurology report the other day, which states:
I am questioning the Multiple Sclerosis diagnosis. Patient has very few lesions for having been diagnosed for four years (I have 6 total) about 1-2 per year. I am beginning to wonder if this patient has Neuromylitis Optica. It is unclear weather she has Multiple Sclerosis or Neuromylitis Optica at this time.
I am having her do a NMO IgG Titer
MRI of brain and spine, with and without contrast
Then we will discuss findings.
WHAT?!?! I thought you could have MS with two lesions and a clinical episode or two!!!! I also thought that you could have very few lesions for years or NO new ones, ever and still have MS....I'm lost and confused. I'll keep updates as I know them. My MRI is tomorrow and I won't get the other results for about two weeks. So I am sitting here wondering. I think basically if I don't have Devics Disease, then it must still be MS? That's what it sounds like. Either way, if it's neither, I hope he figures it out. I think he may just be ruling out other things, but still, the lesion thing makes me question....BTW, a friend of mine said, "It sounds like he just went to a conference or something on this". When I questioned his nurse about this yesterday, as they drew blood. He went to one last week. Hmmmm.....
Thank's for the rant of mine and the reading eyes. Any help/info would be appreciated...
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