Hard to get a diagnosis?

Lewy Body Dementia is caused by the attachments of protein clusters to the nerve cells in a person's brain.

I struggled for years with mental and physical issues. I was hospitalized three times for depression because my actions didn’t match who I wanted to be and the stress was too much to bear. Even though I didn’t remember some of the things I did, doctors didn’t believe me. Sound familiar?

During the process of trying to get help I was diagnosed with many different mental issues. I was given eight different medications for depression, one of which worked for depression. The base problem was still there and I went to great lengths to find out the big picture.

I had brain MRI’s, neuropsych testing, counseling, psychiatry, and regular doctors. My physical symptoms were stumbling, right knee pain, right knee giving out, constipation that required hospitalization and daily medication to be able to go, incontinence, daydreams, dreams causing me to act out at night, seeing things and others. My family medicine doctor did tests and they found nothing on the brain scan.

After four or more years of worsening symptoms, my wife made an appointment at the University of Minnesota clinic where we saw a neurologist. He ordered the brain MRI and again I went through neuropsych testing. The MRI was read as showing nothing and neuropsych doctor concluded I was seeking attention. We had one more meeting with that neurologist and he was hesitant to tell us the results, especially the thought of thee whole thing being me seeking attention. In that discussion I told him we had paid for tests and treatment out of pocket. After learning that our neurologist advised seeking another opinion at the Mayo Clinic in Rochester, Minnesota. So we did.

We headed to the appointment and were called into an exam room. The doctor came in, asked questions, watched me walk and in 25 minutes or less diagnosed me with Lewy Body Disease and Dementia. After many years of growing symptoms and doctor visits we got the diagnosis in less than 25 minutes. He said this may have been developing for 30 years! Why couldn’t anyone else see this? Did they care enough?

So now this neurologist had to prove it. Back to the MRI machine and a sleep study and PET scan that neurologist saw everything. There was the proof in every test. On top of that he saw two previous head traumas. Those were from severe concussions in high school sports, the only head trauma I had in my whole life.

Then worse news came. He said I had three months to three years to live and I should get my affairs in order right away. He seemed to think it would be sooner rather than later. We wanted another opinion!

We saw a different neurologist at Mayo. While she agreed I had the disease, she disagreed with the estimates of my life span. Not only that she told us about a drug called Donepezil, but we found out it was a drug that was developed to treat Alzheimer’s Disease but failed to work. They tried it for Lewy Body and it worked for some people. We agreed to try it and it changed my life dramatically, at least mentally.

So after a long battle with the medical field, we had our treatment and a medication that worked, at least for now.

I’m interested in how it was for everyone else who had symptoms. How long did it take to get a diagnosis? Were you believed? Did tests show nothing at first? Please feel free to comment.