You made some good points. I too experienced the frustration of going to the wrong medical professional. He was a more of a psych-neuro guy and not a neurologist. Unfortunately I wasted 4 hours taking tests that did not really add up to much. He seemed more interested in diagnosing me with depression or stress induced anxiety and completely discounted the fact that I experienced my second diagnosed concussion in a year. I work in a demanding job with a lot of responsibility so of course I experience stress but I like stress, it helps push me to achieve. My doctor fortunately seemed to support my views of the missed diagnosis however he has not been able to come up with a good treatment to help alleviate my lingering symptoms of poor balance, poor memory and sensitivity to noise. And to make things worse its now 2 months later and I hit my head again and was diagnosed with a third concussion. This one has made the lingering symptoms worse and my reaction times and vestibular deficiencies have lead my doctor to restrict me from driving. It sounds as if you may have an understanding of the issues from concussion symptoms that last a while. Have you made any progress in recovery?
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Originally Posted by Mark in Idaho
I take exception to Marilee's recommendation of getting to a neurologist. While this may sound like the logical thing to do, Marilee was very fortunate to find a neurologist who has some level of understanding of Post Concussion Syndrome.
I have been seen by many neurologists. Only 2 out of at least 12 or 15 had a decent understanding of concussion. The wrong neurologist can start a medical record that can follow your quest for help and get in the way of future help. The riskiest neurologist in my opinion, is the one who works in a large multi-specialty group practice or HMO.
I am talking of the clinics of group that share access to medical records. If the family practice and ob/gyn and neurologist, etc. all have access to your complete records, the wrong label or diagnosis can block you access to further care.
In my case, one doctor diagnosed my as somatoform disorder. This can mean three different things. His symptoms are unexplainable, his symptoms are likely made up (psycho-somatic or hypochondriac) or we recognize his symptoms but can not reach a definitive diagnosis. The first two can leave you in limbo land or worse. The last can hopefully leave a chance at further diagnostic work.
After one doctor in my HMO diagnosed me as somatoform, my access to further help shut down. I spent my own money to get further diagnostic work but even then, my health care company (HMO) refused to even consider my private doctor's diagnosis.
So, if your are going to see a neurologist, get a referral to a neuro who has a true understanding of concussion. This will be a difficult but important task. If litigation is involved, do not do this wiithout the advice of your attorney.
My recommendation for early on is to learn to recognize your symptoms. The TBI Guide is a good startat helping you understand them. Telling a doctor that you don't feel right or feel dizzy or confused is too subjective. If you can better define the specific symptoms (but not in medical terms), the doctors can put a better picture together. Using medical terms creates a risk of being rejected by doctors who do not like patients doing self-diagnosis. The modern term for this is cyber-chondriac.
Instead, say:
I get stuck trying to find a simple word. I might know what I want to say but can't get the word to my lips. This has never happened to me before as often as it happens now.
The bright lights overwhelm me.
The voice of multiple people talking at the same time causes me to become disoriented.
If I try to watch TV, I can not pick out the dialogue from the common noises in the house like the heater fan, etc.
Try to define any specific situations where your symptoms get worse. Morning, at the mall, after trying to read, etc.
It also helps if you can bring a family member with you to explain what they observe. They can also take notes for later reference.
And, DO NOT SOUND LIKE YOU ARE WHINING or grumbling. A journal can help take the whine out of your presentation of symptoms to the doctor.
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