Undiagnosed neuropathy and weakness

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

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?

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?

Hi John. Thanks for your question. No, there was no injury. It started in 2022 with a bout of double vision, some balance troubles, and the beginning of urinary and bowel problems. I was diagnosed with sarcoidosis - but that doesn’t seem to be the issue. Things have got progressively worse over time. Then in February I lost all strength on my left side, including my arm. Some of that has returned, but that landed me in a wheelchair and a catheter. Stroke was ruled out so that is presumed to be neurological as well.

My father-in-law began with the announcement that his “legs are shot”. It has gotten progressively worse and he is now wheelchair bound. His legs will not carry him and he can only stand with assistance and for only a minute or so to help transfer him to the bathroom use with grab bars. He has been seen by a neurologist and had many tests, which came up with no known cause. He is 91 and was in good health before this began. Are the doctors throwing him to the wind because of his age? He is getting depressed because of this condition.

Hello @rlipper, Welcome to Connect. Sorry to hear your father-in-law hasn't received much help. He's not alone not having a cause for his neuropathy. I also have an idiopathic diagnosis but they suspect mine might be genetic. One site that I have found quite helpful when trying to find out how to manage my neuropathy is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/.

Does he have pain with his neuropathy or is it just loss of leg use due to numbness and weakness in the legs?

Hi David, Not sure if it will help but there are quite a few discussions and comments on sarcoidosis. Here's a search link of Connect showing the discussions and comments by other members - https://connect.mayoclinic.org/search/discussions/?search=sarcoidosis.