Need Info

[GGBEE]

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...

[Grace53a]

Hello,

I have NMO (Devic's Disease). Although a positive test result is definitive for NMO, a negative cannot rule it out. I have experienced episodes of both paralysis and blindness. There is also NMO Spectrum Disorder, which is *either* relapsing ON, *or* relapsing LETM. That being said, not all cases of relapsing ON or relapsing LETM are attributable to NMO.

While it is true that most NMO patients do not initially present with brain lesions, the research community now knows that a percentage of patients will indeed eventually develop brain lesions, though not in pattern that is consistent with MS. Common areas are the Pons, Thalamus, Hypothalamus and other areas of the brain proper that have a high expression of Aquaporin-4.

The Guthy-Jackson Charitable Foundation for NMO Spectrum Disorders Research has the most comprehensive collection of NMO scholarly articles on the web. They also have a patients community, called Spectrum.

Try not to stress, as it is likely that your neuro is just being thorough by eliminating other causes for your symptoms.

Grace (NMO+ since 2005)

[Redwings]

Hi GGBEE:
It was only in about 2004 that NMO was recognized as being a different disease than MS. Because they're both demyelinating diseases with a somewhat similar presentation, NMO is often misdiagnosed as being MS.

As Grace53a pointed out, a positive NMO antibody test is diagnostic for NMO, but a negative test doesn't rule it out. In the case of a negative test, NMO has to be diagnosed based on other signs and symptoms. It often takes a practitioner who's experienced with NMO to be able to differentiate between NMO and MS. Your post doesn't give the impression that your current neuro has the experience to do that. A second opinion by an experienced neurologist might be in order if your test is negative. The website of the Guthy-Jackson Charitable Foundation can give you leads on where to find doctors who are qualified to evaluate you for NMO.
http://www.guthyjacksonfoundation.or...united-states/

[GGBEE]

Thank's guys. Grace, I've talked to you.... However, I just got and read his report yesterday. Good luck on me seeing anyone here! I live in Alaska. I have no funds to fly somewhere. We don't even have a specialist here. Just Neurologist. My lesions present in the places that MS lesions present, not where NMO ones do. I don't have many symptoms of NMO. Like I said, he went to a conference on NMO and I think he figured it sounded like that, so wants to be sure. I won't go through anymore testing if this comes back negitive, along with the MRI of my brain and spine.

[Grace53a]

Yes, we have talked. :-) So glad that you're here at MSWorld.

Gracie

[GGBEE]

My MRI is today.... I get the CD right away. I'll call Neurologist to look at it. Hopefully he will be able to tell me SOMETHING today on how my brain/spine looked. It will take about three hours they said. It's hard to lay on my back right now, because my chest feels heavy or squeezed....

[GGBEE]

Had my 3 hour Brain/Spine MRI. Hopefully neuro will call tomorrow. I have the CD and pictures, but don't know how to read anything. The report will be ready tomorrow.

[GGBEE]

Okay, results are in from my MRI radiology report.

Result: From the FLAIR and proton density imaging, several small punctate areas of bright signal are present within the white matter tracts, the most obvious in the mid right periventricular area adjacent to the corpus callosum.
Otherwise the basic pattern of the gray-white matter areas maintained. Following the infusion of intravenous contrast, no abnormal enhancement is present. Cerebellar pontine angles are unremarkable.

Impression: A few small, punctate areas of bright signal are present of FLAIR and proton density imiging. These are unusual in an individual of this age and raise concern for a demyelinating process, or result of severe migraines (which I had all my life, but NEVER showed lesions and have gotten better). or of vascular instability, such as vasculitis (which I don't have either). These lesions are chronic with no evidence of any acute injury.

Spine:
Impression (I don't understand any of this)
Impression: Essentially unremarkable MRI of the cervical spine. There is subtle heterogeneity of signal for the spinal cord from C2-3 through C5-6 but without distince focal lesions or evidence of abnormal enhancement with contrast.

I brought in the CD to the neurologist along with the radiology report and I hope he calls after reviewing it to tell me "his", findings. My NMO IgG Titer is still being processed in Seattle. I won't know anything until late next week. If then.... So far it is showing me lesions on my brain, in the areas that MS lesions are shown, which makes me think it's still MS and not Devics Disease. Still, it's a process.
Thanks for listening. GG

[Grace53a]

Hi GGBEE,

RE: Migraines. I had really severe migraines for years and a few non specific lesions showed up on my MRI. Thankfully, I haven't had a bad one since the birth of my last child. Knock Wood!

I've got my fingers crossed that your diagnosis remains MS and not NMO.

Hang in there.

Gracie

[GGBEE]

Migraines are no fun. I have had them since 15. I'm down to about two a month and it seem's better than even six years ago. Like the Neurologist said, "these are not migraine lesions", he told me that had they been, I would have had them a lot sooner. I haven't had a migraine since last month and just had one at 4:30 this morning, that is lingering. I think migraines are also more common in people with MS too, from what I read. I have also had numbness sensation on my left side, mostly in my face and leg. I am keeping fingers crossed as well. Thank you for your love and support.
GG