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.