How to get help with possible autoimmune issue.
Looking for advice — cauda equina nerve root enhancement, bladder loss, and nobody will follow up
Posting for a close relative, a young adult, because they’re hitting walls everywhere and I’m hoping someone here has navigated something similar.
Several months ago they lost bladder control/function. They eventually got in with a urogynecologist, who tried to do a urodynamics study — but the study couldn’t be completed because they couldn’t feel their bladder filling at all. That seems like a significant neurological finding on its own, but it didn’t lead anywhere.
Last month things got bad enough that they went to the ER at a major academic medical center. An MRI with contrast showed enhancement of the cauda equina nerve roots. And then — I still can’t believe this — they were discharged with the explanation that the back pain and bladder problems were caused by constipation. Constipation does not explain nerve roots enhancing on MRI, and it’s been a month with no improvement, so that theory has already failed its own test.
Since then:
• The wait to even see their primary care doctor is 8 months. No PCP means no easy referral.
• A neurologist at the same health system blew them off.
• They self-referred to Mayo Rochester. Triage routed the application to internal medicine, and internal medicine declined it — said they didn’t have room. Given the MRI finding, it seems like the application should have gone to neurology in the first place, and that’s where they now want to apply.
So: a young adult with documented cauda equina nerve root enhancement, months of bladder dysfunction, an incomplete urodynamics study due to absent bladder sensation, and no doctor actually working the problem.
Questions for anyone who’s been through this:
1. After a Mayo application gets routed to one department and declined, how do you get a new application directed to neurology instead? Is there a way to specify the department, a number to call, or does it take a physician referral to make it stick?
2. Any experience with nerve root enhancement workups (arachnoiditis, CIDP, sarcoid, Lyme, etc.) — who finally figured yours out?
3. Any Wisconsin/Midwest recommendations for neurologists who take these cases seriously?
Any advice appreciated. They’re worn out but not giving up.
Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
