effective treatment plan for neuromyelitis

Posted by upnort @upnort, Feb 20, 2022

Does anyone know of the most effective treatment for neuromyelitis? I am currently having two infusions of Rituximab 6 moths apart. Currently, there has been no improvement in the numbness of my lower extremities, and my walking ability has gradually become limited (I currently use treking poles – instead of canes – to get around). Any suggestions would be greatly appreciated and helpful.

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@upnort do you mean Neuromyelitis Optica (NMO)?

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I've been living with this (not optica – just T6 and below) for two years now and neither Mass General Hospital nor the Mayo Clinic has been able to find a cause. Even had a spinal biopsy last month as a last ditch effort and that came up negative. Currently getting around with a walker and cane for short distances. Often drugs like Rituximab are given as trials to eliminate some inflammatory diseases as a cause (I had Remicade for 5 months). Unfortunately, from what I've read about 15% of these cases wind up being ideopathic.

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@colleenyoung

@upnort do you mean Neuromyelitis Optica (NMO)?

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NMO or NM? My problems are confined to the central nervous system: lesion on the spine resulting in numbness of lower extremities and compromising my walking and balance. I believe this group shared a video by one of the Mayo neurologists distinguishing the two types (NM and NMO). Could you repost that video link> Thanks.

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@upnort

NMO or NM? My problems are confined to the central nervous system: lesion on the spine resulting in numbness of lower extremities and compromising my walking and balance. I believe this group shared a video by one of the Mayo neurologists distinguishing the two types (NM and NMO). Could you repost that video link> Thanks.

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@upnort and @oldradioguy here is a video where Sean Pittock, M.D., a Mayo Clinic neurologist, discusses the differences between Neuromyelitis Optica and Multiple Sclerosis.

I think this article and video might also be useful for you:
– Transverse myelitis: Know the signs and symptoms https://newsnetwork.mayoclinic.org/discussion/transverse-myelitis-know-the-signs-and-symptoms/

Dr. Eoin Flanagan, a Mayo Clinic neurologist, discusses transverse myelitis.

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@colleenyoung

@upnort and @oldradioguy here is a video where Sean Pittock, M.D., a Mayo Clinic neurologist, discusses the differences between Neuromyelitis Optica and Multiple Sclerosis.

I think this article and video might also be useful for you:
– Transverse myelitis: Know the signs and symptoms https://newsnetwork.mayoclinic.org/discussion/transverse-myelitis-know-the-signs-and-symptoms/

Dr. Eoin Flanagan, a Mayo Clinic neurologist, discusses transverse myelitis.

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This is truly ironic. Dr. Flanagan was ny doctor at Mayo Clinic from 2019 – 2021. I was diagnosed with "myelopathy" from my first appointment to my last. I underwent dozens of tests, scans, and blood draws, and tried the proverbial list of drug treatments. At no point in my "tenure" at Mayo Clinic did Dr. Flanagan mention NMO or even test for it – even though NMO is listed as one of several diseases in which he specializes. I was denied a second opinion within the neurology department. Subsequently, I was referred to the NIH- Undiagnosed Disease Program in Bethesda. After a two year wait, I was told by NIH I would be "wasting my time" by visiting their campus as they are primarily a research/study based facility, and day-to-day health care is left up to local health care providers. For the last year I have been under the care of a local nuerologist (Marshfield Clinic, Marshfield, Wisconsin). I am being treated for NMO and just completed by third leg of rituxan infusions (2 infusions 2 weeks apart, every 6 months). To date, I have seen no improvement in my mobility. My sypmtoms continue to worsen: numbnes in both legs and a drop foot on my right leg. I have to use walking sticks daily as my balance and drop foot have decreased my overall mobility. Four years ago I was running 5 miles a day – today, at the young age of 72, I cannot walk more than 20 minutes with the aid of walking sticks/rollanator. In the interim, I was diagnosed with prostate cancer (Gleason score of 7) and recently completed 28 treatments of radiation and Lupron therapy.
Where do I go from here? Do I contact Sean Pittock at Mayo, even though I was denied a second opnion almost 2 years ago? Are there other treatments for NMO (the 3 drugs that are mentioned in most recent articles are extremely expensive – hundres of thousands of dollars) and far out of reach of the average patient like myself. Again, who do I turn to for help? Where do I go? Is there help for me somewhere in our health care system? All suggestions and possible options would be more than welcome.

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