I am living with a neurological condition of unknown origin. After two years, I have no diagnosis.
The headaches came out of nowhere. The pain was intense and lasted for two weeks. They diminished over the next week and left me blind. The vision in one eye returned while the other remains seriously impaired. Batteries of tests told the doctors what the problem isn’t. But all the king’s horses and all the king’s men can’t tell me what the problem is, or if it will happen again.
I won’t bore you with all the details, but I will say without reservation it was the most disturbing and unsettling thing I have ever experienced. The initial uncertainty of knowing something is very wrong but not knowing what shook me to the core.
The mind wants to run to the worst possible scenario. In this case that meant one thing: A brain tumor. Trust me, waking up with that thought pretty much ruins your whole day. Imagine my relief when the first MRI report came back with the words “There is no intracranial mass”. Unfortunately, that and subsequent MRI tests along with spinal taps and visits with ophthalmologists, neurologists, retinologists, neuro-ophthalmologists, and other you-name-it-ologists have not provided a definitive answer.
The leader in the clubhouse is still multiple sclerosis, but no one can say for sure. The visual disruption and optic neuritis are symptomatic of MS, but there is no evidence (yet) on the MRI tests. It is a real-life medical mystery that has the doctors stumped. They can find nothing wrong with my brain, eyes or anything else…other than the minor detail that I am legally blind in my left eye. It’s frustrating, but it is what it is.
Living with an Unknown Diagnosis
Two years later I still have severe vision disruptions in my left eye and no idea why. There has been no recurrence of the headaches and I exhibit no other symptoms of any neurological condition.
The vision issue has become my new normal and I have accepted it and made friends with it. I don’t know what the future holds, but I can’t do anything about it, so I am not going to worry or let it affect my enjoyment of life.
But this experience changed my perspective on many things. I appreciate the life’s blessings more than ever. I am a better friend, husband and boss. Everyone who knows me says I more patient and understanding of others shortcomings.
In a strange way, I am a happier person. After being blind for a month, I cannot express how grateful I am to have sight in one eye.
I once took my good health for granted. No more. I kicked my fitness program up about five notches; cleaning up my diet, hitting the gym with more intensity and shedding about 20 lbs of fat I did not know was there. I am in peak physical condition to fight this thing, whatever it may be.
In the meantime, what I can see of life is good.
Advice to Those in Similar Situations
First and foremost, do not search for answers on the internet. It will only scare you. There is too much misinformation out there. Rely on your doctors, even if they can’t tell you much. Limited information is better than bad information.
Remember, contrary to many the opinion of many doctors, you are in control of the doctor patient relationship. Take charge of it. Be relentless in your questions. Get a second opinion. Do not be afraid to be a pain in the butt or say “no” if you question the value of a test or procedure. The doctor works for you. Make sure he knows it. This is your health, your life.
Keep a positive attitude. Sometimes no news really is good news. It could be worse…it could be raining.