Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
@yojib sorry to hear about your relative’s health problems! I hope they get proper help soon!
Where do they live? Wanting to know so I can avoid that particular medical facility …!
It was in the Milwaukee, WI area
So sorry for what your family is going thru. It’s hard to watch a family member struggle especially if they are young. We have so many autoimmune diseases in my family affected 3 generations.
My own struggles got really bad in my 30’s. I’m 67 now with 3 autoimmune diseases. Back then it was harder to get a diagnosis. It took 8-10 years of being dismissed by many doctors because they couldn’t figure out what was wrong.
I tried to get into Mayo during a particularly bad flare but the wait was too long and I was getting worse fast. We were living in the far northern suburbs of Chicago at the time blocks from the Wisconsin border & someone suggested going to the Monroe Clinic in WI. It was a smaller hospital in Monroe, WI that worked with Mayo & did the team approach like Mayo. Finally got my diagnosis of Lupus with a good Rheumatologist there after much testing. That might be a good option if you can’t get into Mayo.
As far as getting into Mayo, fast forward to this past April here in Phoenix area. I got very sick. Went to 2 different ER’s but did not get admitted because they couldn’t figure out what was causing my symptoms and I have AI issues & they didn’t have a Rheumatologist available. I had an appointment at the Mayo here but it was not for another 6 weeks. After getting so bad that my husband took me to their ER & they admitted me right away with the promise they would keep me until they could figure out what was going on & they did!
2 weeks in the hospital & I was diagnosed with a new AI disease that was much more serious. I’ve been recovering with careful monitoring & finally getting better.
But wanted to share something’s I learned about getting into Mayo, which I would recommend for difficult cases They are amazing!
When I first called for an appointment I had to have a referral & records sent to the Rheumatology Department. This was to have them evaluate my condition. Important to let them know how bad it is, if your family member had been hospitalized & how disabling it is. But they have to have both records & referral. Since they already have a diagnosis specific diagnosis of a nerve disease if you could ask for a specific specialty of a Neurologist instead of Internal Medicine. If you get in, the Neurologist will involve other specialists as test come back if needed.
The appointment schedulers were extremely helpful to me.
Good luck & I hope this helps!