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Autoimmune disease misdiagnosis?

Posted by upnort @upnort, Jun 27, 2023

I have just finished my 4th round of infusion (rituximab) for a diagnosis of neuromyelitis optica(numbness from toes to lower back, difficulty walking, balance issues, foot drop right foot, muscle weakness, tiredness).I use walking sticks and a walker to aid in my mobility and have had my car outfitted with hand controls so I can contine to drive. I did NOT test positive for the AQP4 or MOG antibody, yet my neurologist insists my diagnosis is correct and the infusions of rituximab should continue despite its 2-year ineffectiveness.
My symptoms continue to worsen. I am scheduled for an "evaluation" at Mayo- Rochester(I live in northern Wisconsin) with a neurologist-consultant in late July (who will look over my scans and MRI's over the past 2 years since I have been under the care of my current neurologist in Wisconsin. ) What should I anticipate at this "evaluation"? What recommendations would you suggest? I am desperate for answers that would give me reassurance of my future ( I am 73 years old and the primary caregiver of my wife, who is in the middle stages of Alzheimer's.)
I would appreciate any input.

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 27, 2023

Hello @upnort, I'm sorry to hear your symptoms continue to worsen. I'm hoping Mayo Clinic Rochester can find some answers and help for you. I'm hoping others with neuromyelitis optica may be able to share some suggestions with you. I did find some recent research information that might help shed some light and provide some information for the upcoming conversation with the neurologist.

--- Factors associated with the misdiagnosis of neuromyelitis optica spectrum disorder: https://pubmed.ncbi.nlm.nih.gov/36610360/
--- Common Misdiagnoses: MS and NMO: https://neuromyelitis-optica.net/misdiagnosis

When is your evaluation scheduled at Mayo Rochester?

REPLY
upnort | @upnort | Jun 27, 2023

Scheduled for July 25 at Mayo in Rochester, MN.
Ironically, the neurologist/consultant will be the same doc I saw in 2019-20 at Mayo. During that time no diagnosis was made, and I was referred to Udiagnosed Disease Program in Bethesda, Md.
Then came COVID and my acceptance into the program was cancelled indefinitely. I was on my own for six months until my local neurologist finally made the NMO diagnosis in July of 2021, with my first infusion in September of that year.

REPLY
1 reply
upnort | @upnort | Jun 29, 2023
In reply to @upnort "Scheduled for July 25 at Mayo in Rochester, MN. Ironically, the neurologist/consultant will be the same..." + (show)
@upnort

Scheduled for July 25 at Mayo in Rochester, MN.
Ironically, the neurologist/consultant will be the same doc I saw in 2019-20 at Mayo. During that time no diagnosis was made, and I was referred to Udiagnosed Disease Program in Bethesda, Md.
Then came COVID and my acceptance into the program was cancelled indefinitely. I was on my own for six months until my local neurologist finally made the NMO diagnosis in July of 2021, with my first infusion in September of that year.

Jump to this post

Transverse Myelitis instead of Neuromyelitis Optica Spectrum Disorder?
From my research, transverse myelitis is spinal cord inflamation which can result from an infection or inflammatory cause due to misdirected immune response, resulting in various symptoms including those I have mentioned in my previous post. Could I have TM instead of NNO?

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