Looking for help with managing symptoms of myelopthy

Posted by upnort @upnort, Jan 10 12:58pm

I am looking for possible solutions to managing symptoms related to myelopathy (lesion on spinal cord). I am 74 who has been evaluated for chronic thoracic myelopathy with symptoms onset in 2017. I have experienced progressive neurological decline with sensory loss, nuerogenic bladder/bowel and in the past 3 years a significant gait decline (presently using a walker). I have had extensive testing (both at my local clinic in Wisconsin as at Mayo-Rochester in neurology dept.) including evaluation for autoimmune or paraneoplastic etiologies and structural etiologies which have been negative or normal. I have trialed prednisone and rituximab but to continue to decline. I was locally (Wisconsin clinic) diagnosed with neuromyelitis optica, but Mayo diagnosis refuted that, saying that my clinical course and trajectory are not consistent witb this disease. I have had at least 3 negative AQP4 antibodies, and my disease course is not responsive to steroids or rituximab. Overall, Mayo feels my "clinical presentation is highly unlikely to be inflammatory." I have also had 3 spinal angiograms which were all negative for dural AV fistula. At this point, Mayo is recommending two possible options: (1) spinal cord biopsy (2) symptoms management. Any suggestions would be greatly appreciated as my symptoms continue to worsen (numbness from waist down, drop foot right leg, swollen right foot/ankle, sensitive skin on both legs, muscle spasms both legs, urinary frequency, loss of balance).

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westcom | @westcom | Jan 11 7:18am

I’m assuming if surgery was an option Mayo would have suggested it. Has it been discussed? I had a myelopathy on my T10 that was causing imbalance problems. It was caused by a ligament pressing on the spinal cord not a lesion. Surgery did relieve the pressure and corrected balance issues. With a biopsy is treatment different depending on result? Perhaps that would be your guidance to a decision.

upnort | @upnort | Jan 11 5:01pm

Surgery was never an option as a form of treatment. The biopsy of the spinal cord lesion - considered a surgery (3-4 hours, general anesthesia, hospital stay - carries risks of paralysis and possible worsening of existing symptoms. I was also told there would be no quarantee of the etiology of the disease or the reversal of numbness from my waist down. My neurologist at Mayo does not favor a biopsy. He would go with symptoms management (muscle spasms, inflammation, etc.) and continue with physical therapy (drop foot, stiffness, balance, and overall mobility). I am a prostate cancer survivor (two years) and the main caregiver for my wife who is in her 10th year of Alzheimer's. It's been a long haul so far, but I'm holding on to the hope that Mayo will continue to keep working for solutions, not only for me, but for patients everywhere who have traveled the long and winding road in hopes of a healthier tomorrow. Thanks to all of you here as we all continue to connect and support one another.

westcom | @westcom | Jan 12 8:22am

What a difficult journey and choices to make while you provide care for your wife. I lift you up in prayer for strength for each day and Mayo solutions for your continuing health.