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Neuromyelitis optica: What helps?

Posted by upnort @upnort, Feb 3, 2022

Diagnosed in late July with NMO by my local nuerologist after 3 years of going to various clinics and hospitals. I underwent first two infusions of rituxan in September - set for two more in March. I have seen no improvement in my symptoms(numbing.tingling in lower extremities: from toes to waist.) I currently use walking sticks for mobility and balance.
I spent almost 2 years at Mayo without a specific diagnosis(other than "myelopathy"). I was given a referral to UDN-NIH in Bethesda, MD. I was accepted in the program but have been put on hold due to COVID. I am 72 years old and also about to begin radiation treatment for intermediate prostate cancer. I would appreciate any suggestions and/or feedback.

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Amanda Roe | @amandajro | Feb 6, 2022

Hello @upnort. Can I start by clarifying if you meant you had Rituximab infusions? If so, I will update the title of your post to allow for more members to find and engage with you.

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upnort | @upnort | Feb 7, 2022

You are correct in your clarification. Thank you for updating the title of my my post.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 8, 2022

Thanks for the clarification, @upnort.
You may be interested in reviewing the past discussion about NMO to learn what others have found to be helpful in managing the condition.
- Looking for info and people with Neuromyelitis Optica (NMO) https://connect.mayoclinic.org/discussion/hi-i-came-here-looking-for-the-same-kind-of-info-about/

In this video, Sean Pittock, M.D., a Mayo Clinic neurologist discusses the symptoms of NMO as well as the advances that have been made in the research regarding NMO.

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upnort | @upnort | Nov 15, 2022

What tests, if any, are used for diagnosis of NMO (neuromyelitis optica)? What treatments are currently available for NMO?
I was diagnosed with "myelopathy" at the Mayo Clinic in 2019 with no known cause. After a year and half at Mayo in Rochester, and several dozens of tests, scans, and blood draws, my neurologist determined we had "run out of options" regarding specific diagnosis (scans earlier showed a lesion on the spine) and effective treatment of symptoms (numbness of lower extremities). I was denied a second opinion in the neurology department by Mayo. At no point in my year and a half at Mayo was a mention of possible neuromyelitis Optica. Ironically, Dr. Flanagan, my neurologist at Mayo, was considered to be a specialist in NMO, but the disease was never part of our discussion/treatment while I was a patient at Mayo. Consequently, I was referred to the Undiagnosed Disease Program at NIH in Bethesda, Md. I was accepted into the program in 2020, but was put on "pause" due to the pandemic. Two months ago I was informed by NIH that I was no longer a candidate for their program, as they made the determination that "I was under the best care at Mayo and NIH could not do anything more for me." They recommended I seek further care with my local health care provider. I was referred to a local nuerologist (Marshfield Clinic, Marshfield, Wisconsin.) It was here that I was diagnosed with Neuromyelitis Optica Broad Spectrum and began treatment of rituxan infusions every six months. Presently, my symptoms have persisted: numbness in both legs, and I have also developed a drop foot on my right leg. I have to use walking sticks to get around, and my balance is compromised. Four years ago I was running 5 miles a day. Today, at the young age of 72, I have to push myself to walk 20 minutes with my walking sticks, and I have recently purchased a rollanator for better balance and maneuverability. I had my car modified for hand controls as I could no longer use my feet to drive. I also finished radiation treatment this summer for prostate cancer.
Obviously, my life has changed dramatically. I am looking for other options for treatment for my NMO. Any suggestions would be greatly appreciated.

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Nov 15, 2022
In reply to @upnort "What tests, if any, are used for diagnosis of NMO (neuromyelitis optica)? What treatments are currently..." + (show)
@upnort

What tests, if any, are used for diagnosis of NMO (neuromyelitis optica)? What treatments are currently available for NMO?
I was diagnosed with "myelopathy" at the Mayo Clinic in 2019 with no known cause. After a year and half at Mayo in Rochester, and several dozens of tests, scans, and blood draws, my neurologist determined we had "run out of options" regarding specific diagnosis (scans earlier showed a lesion on the spine) and effective treatment of symptoms (numbness of lower extremities). I was denied a second opinion in the neurology department by Mayo. At no point in my year and a half at Mayo was a mention of possible neuromyelitis Optica. Ironically, Dr. Flanagan, my neurologist at Mayo, was considered to be a specialist in NMO, but the disease was never part of our discussion/treatment while I was a patient at Mayo. Consequently, I was referred to the Undiagnosed Disease Program at NIH in Bethesda, Md. I was accepted into the program in 2020, but was put on "pause" due to the pandemic. Two months ago I was informed by NIH that I was no longer a candidate for their program, as they made the determination that "I was under the best care at Mayo and NIH could not do anything more for me." They recommended I seek further care with my local health care provider. I was referred to a local nuerologist (Marshfield Clinic, Marshfield, Wisconsin.) It was here that I was diagnosed with Neuromyelitis Optica Broad Spectrum and began treatment of rituxan infusions every six months. Presently, my symptoms have persisted: numbness in both legs, and I have also developed a drop foot on my right leg. I have to use walking sticks to get around, and my balance is compromised. Four years ago I was running 5 miles a day. Today, at the young age of 72, I have to push myself to walk 20 minutes with my walking sticks, and I have recently purchased a rollanator for better balance and maneuverability. I had my car modified for hand controls as I could no longer use my feet to drive. I also finished radiation treatment this summer for prostate cancer.
Obviously, my life has changed dramatically. I am looking for other options for treatment for my NMO. Any suggestions would be greatly appreciated.

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@upnort I don't have any experience with your condition, but in looking it up, I found this link to the Merck Manual. There is a link to click for the patient version of this information that isn't as technical, but you can read about diagnosis and treatment suggestions.

"Neuromyelitis Optica Spectrum Disorder (NMOSD) "
https://www.merckmanuals.com/professional/neurologic-disorders/demyelinating-disorders/neuromyelitis-optica-spectrum-disorder-nmosd

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