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Misdiagnosed--Not MS

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Old 07-24-2012, 04:52 PM   #1
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lisa1599 HB User
Misdiagnosed--Not MS

I just wanted to share my story and hopes it will help others in the future.

My symptoms started three months ago, first I had nausea, hiccups and intractable vomiting for three to four weeks. About a month later I had optic neuritis and upper and lower extremity numbness. My neurologist ordered only a MRI of the brain which came back completely normal. I had an LP which showed a high WBC count and oligoclonal bands. Though my brain MRI was normal, my neurologist diagnosed me with MS and wanted to start Rebif immediately.

I couldn't understand why my MRI was normal, so I had to ask him for a cervical spine MRI. He said the results would not change my management but he finally agreed. My cervical spine showed numerous demyelinating lesions. I asked him if he had ever seen anyone with MS whose brain was completely normal with only spinal lesions. He said it was atypical but still felt I needed to start MS treatment immediately.

He was not a MS specialist but assured me he had a lot of experience with MS. I went to get a second opinion.

I am fortunate to live in an urban area and was able to get an appointment with a specialist at a MS center. My new neurologist ran some further tests and now I have been diagnosed with Devic's disease (NMO). I tested positive for anti-NMO antibodies.

Though I am devastated by this diagnosis and have had a rough three months dealing with my new chronic disease I realize how lucky I am to get the correct diagnosis relatively quick. I am relieved not to have started Rebif, which could have been potentially harmful.

Please remember to advocate for your own health, ask many questions and try to see a MS specialist. My first neurologist was very dismissive, he even mentioned NMO when I asked about the cervical spine but told me it was so rare and found only in Asians (I am not of Asian descent) and wouldn't bother testing me.

Thanks to all for the answers and advise.

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Old 07-24-2012, 05:31 PM   #2
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Re: Misdiagnosed--Not MS

Sorry to learn of your diagnosis of Devic's BUT I am glad you have a definite answer. I am glad you are able to know what you have to face. Thank you for sharing your testimony.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

Old 07-24-2012, 06:01 PM   #3
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Re: Misdiagnosed--Not MS

I too, am sorry to hear of you dx of Devics..but im also really angry for you at your doctor. It is common knowledge, even among most laymen, that Devics, mimics MS in so many ways, but almost always presents as optical neuritis followed by a normal brain MRI and a problematic spine MRI. Thats why typical MRI protocol includes doing both brain and Cspine with and without contrast from the onset of supsected MS...its to RULE OUT DEVICS!

Its terrible that you had to go through all this, but hopefully your post will teach others to advocate for themselves...and good for you! For taking control of the situation!

Please stay strong and know your in our thoughts..
RRMS- dx 05

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