My son had cryptococcal meningitis, it went misdiagnosed until he had a life changing seizure in alcohol rehab which he thought was the problem. I live in southern Arizona, and he wanted to go back to his home town of Carbondale, Colorado.
He left my house and went to his Mom's in Texas. There he began to have symptoms, but he thought it was long covid. He made his way back to Colorado in the spring of 2023. His symptoms continued, and he began to be confused and have balance problems.
He called me Christmas 2023 and said "Dad I'm messed up and messing everything up, I want to go into rehab". I flew to Colorado and brought him back to Arizona, where he had insurance. He went into rehab and 2 weeks later had a devastating seizure and went into the hospital for a catscan.
He had lesions in his brain and was transferred to the main hospital in Tucson. There they did an MRI and confirmed the lesions and said this was very serious. He was in the hospital for 5 months, the treatment didn't work, and he passed on 06/06/2024.
We have been devastated ever since. It was horrible. The main issue is how hard it can be to get a correct diagnosis with this disease, it would have taken some luck and a very good doctor to get it right. The doctors kept saying he had walking pneumonia. They could see a mass in the x-rays, but the meningitis is so rare that they missed it. Even if he had lived, he would probably have had fairly serious health problems.
My experience with Meningitis is that it can be very hard to detect and diagnose early enough to make a difference.
Wilson Goodrich
October 2024