Undiagnosed neuropathy and weakness

Posted by David Rich @davidcrich10, 13 hours ago

I have weakness from the waist down, numbness, bladder issues (require a catheter), and constipation. Because of the weakness I now need to wheelchair. MRIs have shown no lesions. I had been diagnosed with neurosarcoidosis but remicade didn’t help and now that diagnosis is not thought to be the answer. There is now no diagnosis, but taking acemtra infusions. Any insights?

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celia16 | @celia16 | 12 hours ago

That sounds very frustrating! Have you been seen by any major medical hospitals?

John, Volunteer Mentor | @johnbishop | 12 hours ago

Hello David @davidcrich10, I would like to add my welcome to Connect along with @celia16 and others. It is frustrating not to have a diagnosis and a treatment that provides some relief. From your description of the symptoms, it sounds similar to Cauda Equina Syndrome.

"Cauda equina syndrome is a medical emergency that happens when an injury or herniated disk compresses nerve roots at the bottom of your spinal cord. The cauda equina nerves communicate with your legs and bladder. It causes back pain, weakness and incontinence. Quick surgical treatment may prevent permanent complications."
-- Cauda Equina Syndrome: What It Is, Symptoms & Treatment
https://my.clevelandclinic.org/health/diseases/22132-cauda-equina-syndrome
There are other discussions and comments from members on the condition if you want to read what others have shared - https://connect.mayoclinic.org/search/discussions/?search=Cauda%20Equina%20Syndrome.

You mentioned having MRIs but they didn't show any lesions. Did your symptoms come after an injury or did they start gradually over a period of time?