do you wonder if you could be amongst the misdiagnosed?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: do you wonder if you could be amongst the misdiagnosed?

Postby HappyPoet » Mon Nov 12, 2012 11:11 am

As of last week...

RRMS diagnosis of 12 yrs changed to NMO Spectrum Disease.

More info for those interested:

ON = Optic Neuritis.
TM = Transverse Myelitis (inflammation of spinal cord).
NMO = Neuromyelitis Optica = ON + TM (includes Asian variant).
NMOsd = NMO Spectrum Disease = ON + TM + specific brain lesions.

Often misdiagnosed as MS, NMO and NMOsd are rare, often severe demyelinating diseases. NMO affects the optic nerves and spinal cord and leaves the brain intact. NMOsd affects the optic nerves and spinal cord and brain (with specific lesions, such as ovoid, periventricular, etc.)

NMO has a highly sensitive auto-antibody blood test (NMO-IgG), but a positive result is not required for diagnosis. A blood test might not become positive for many years or decades; therefore, a negative result does not mean one does not have NMO or NMOsd.

Spectrum of disease: Monophasic or recurrent attacks. Unilateral or bilateral ON. Short-segment (patchy) or long-segment (longitudinal) TM. Brain lesions must be specific for NMOsd. Disease presentations, courses, and prognoses are highly variable. A correct diagnosis may come quickly or may take decades for the disease to fully evolve. Correct diagnosis is crucial because NMO and MS require different treatments: immunomodulation for MS and immunosuppression for NMO and NMOsd.

Because NMO and NMOsd attacks can be severe and even fatal if the cervical cord is involved, my new MS specialist is against me having anymore CCSVI procedures or AO chiro adjustments, both of which involve the neck. Having IV-steroids now, to be followed by Rituxan.
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Re: do you wonder if you could be amongst the misdiagnosed?

Postby elyse_peace » Mon Nov 12, 2012 1:25 pm

i have a problem with the term, "autoimmune theory"
until it has been proven, i believe it is simply a hypothesis.
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Re: do you wonder if you could be amongst the misdiagnosed?

Postby Robnl » Wed Nov 14, 2012 8:20 am

agree :mrgreen:
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