It is so frustrating to not get a diagnosis.
I had an auto accident on 2/1 this year and walked away with a bruise on my left arm from the airbag, 2 staples in my head, and a concussion. Other than a headache, life was good.
Two weeks later, after trying to work with a headache from the concussion, it got so bad that I had trouble remembering the simplest thing about my job. I called my primary's office and agreed to go in that day. After a brief exam, he ordered a brain MRI. The first of many to come.
No damage from the wreck but it was abnormal, in the cerebral peduncle area and it was totally symetrical. I was referred to neurologist. Since then I have had 5 brain MRI's, ct scans and MRI's of chest abdomen and pelvic, a full body bone scan, 2 lumbar punctures 2 aspiration biopsies and one surgical biopsy.
I was relatively symptom free at this point. Although o did have symptoms but later learned they were all misdiagnosed as something else : hearing loss, crying, double vision, loss of balance, and weakness in my legs and arms.
In June, I was told that I should no longer work or drive, so I am basically homebound and reliant on others for transportation. The loss of balance is so bad that i have to use a cane when i am not in my house. And the double vision has gotten to the point where it is difficult to read which is my favorite pastime.
I recently went to a neuroimmunologist that gave me a diagnosis of brombencephalitis brought on by sjogren's. He only looked at my brain MRI. I am still waiting on the biopsy results.
Has anyone else got a cns disorder but no diagnosis. Or if you have a diagnosis, how long did it take to get? Did it take 5 weeks to get a pathology report?
I've been pretty patient but my patience is wearing thin!