MS diagnosis and Neuromyelitis Optica Spectrum Disorder diagnosis

Posted by upnort @upnort, Jan 10 3:04pm

I was diagnosed with Neuromyelitis Optica Spectrum Disorder a year and half ago. For a year and a half prior to that, I was diagnosed with Myelitis. Both diseases have symptoms which mimic MS, but neither neurologist(one at Mayo Clinic in Rochester, MN) felt I have MS. I have posted here before regarding my NMOSD, but very few people – or doctors for that matter – are familiar with this rare disease. My present course of treatment is a twice yearly infusion of rituximab. I am on my third course of this treatment with no improvement in symptoms. I have gotten worse over the last two years. I use walking sticks and a walker to get around, and I have had my car modified with hand controls because I cannot use my legs to regulate the brake and gas pedals. Both of my legs are numb – toes, foot, leg, thighs, and buttocks. My balance is off, and I have developed a drop foot in my right leg. Fortunately, so far there have been no problems with my vision. The latest treatment for NMOSD, according to Mayo Clinic, is with a choice of three drugs recently approved by the FDA. All three drugs are extremely expensive and hence are not part of my present care plan. My question is: what if my present condition has been misdiagnosed? So many of my symptoms are very similar to MS patients. What drugs are currently being used to treat MS? What are my options going forward?

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Hello @upnort, I'm not sure if you've seen the information on the National Multiple Sclerosis Society website but thought you may be able to find some answers to your questions if you haven't already seen the page.

"Neuromyelitis optica spectrum disorder (NMOSD) shares some symptoms with multiple sclerosis and may be misdiagnosed as MS. "
— Neuromyelitis Optica Spectrum Disorder (NMOSD):
https://www.nationalmssociety.org/What-is-MS/Related-Conditions/Neuromyelitis-Optica-(NMO)
The site also has a list of medications used to treat MS here – https://www.nationalmssociety.org/Treating-MS/Medications

Have you discussed your options going forward with your doctor or care team?

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@johnbishop

Hello @upnort, I'm not sure if you've seen the information on the National Multiple Sclerosis Society website but thought you may be able to find some answers to your questions if you haven't already seen the page.

"Neuromyelitis optica spectrum disorder (NMOSD) shares some symptoms with multiple sclerosis and may be misdiagnosed as MS. "
— Neuromyelitis Optica Spectrum Disorder (NMOSD):
https://www.nationalmssociety.org/What-is-MS/Related-Conditions/Neuromyelitis-Optica-(NMO)
The site also has a list of medications used to treat MS here – https://www.nationalmssociety.org/Treating-MS/Medications

Have you discussed your options going forward with your doctor or care team?

Jump to this post

Thanks for the quick reply and the information. I will indeed bring this topic (and information) to the attention of my current neurologist. Is there a specific test – or series of tests – to distinguish MS from other similar diseases? Another question to pose to my doctor.

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@upnort

Thanks for the quick reply and the information. I will indeed bring this topic (and information) to the attention of my current neurologist. Is there a specific test – or series of tests – to distinguish MS from other similar diseases? Another question to pose to my doctor.

Jump to this post

Unfortunately there is no specific test for MS. Here's some info on the topic.

"There are no specific tests for MS . Instead, a diagnosis of multiple sclerosis often relies on ruling out other conditions that might produce similar signs and symptoms, known as a differential diagnosis. Your doctor is likely to start with a thorough medical history and examination."
— Multiple sclerosis – Diagnosis and treatment: https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/diagnosis-treatment/drc-20350274

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I have had optic nueritis, twice, but have another autoimmune disease, not MS. I had the MOG test come back negative, but apparently there are still 80% of unidentified optic nueritis, potentially somehow like MOG.
So we don't know what it really is, except that its autoimmune.

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What, specifically, is a MOG test?

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