Hi everyone,

I have seen yet another Dr who says Post traumatic stress and that I need to see a psychiatrist. I saw one for a year and it didn't help at all.

It was only when I went on leave from work, started doing stuff that didn't provoke symptoms that I started to improve. Of course, the psychiatrist said it was only because I wasn't stressed that I was improving (I had a few disagreements with the boss which was obviously cause I was sick). Anyway, I just wondering especially those that took ages for a diagnosis (MiaVita for example as your story is close to mine) how did you get it?

I'm going on two years and still only have a ptsd diagnosis which makes me think I have that because I haven't been diagnosed properly.

BM

I would be able to understand your story more to try to help you.

Just to reassure you that there are very few doctors out there who know anything about brain injury! Most know about concussions from reading the newspaper headlines. Good luck!!!

Getting a valid diagnosis is very difficult. The Brain Trauma Foundation has been working on diagnostic criteria for concussions. They were awarded a federal contract to set the standards. I have not read anything saying they have completed their work.

A diagnostic that is valid but not accepted by doctors is qEEG using one of the well studied databases. The validity of diagnosing a concussion is 97% or so. Do a Google for "qeeg databases concussion" and you will find some good information.

Mark you hit it on the spot! I did not know what the name of it was.Why is it not accepted by doctor's?If you do not mind me asking?Thanks

Hi brain mush,
I had a very hard time getting a diagnosis. I was diagnosed and treated for chronic pain for many years before getting the TBI/PCS diagnosis. I just could not figure out how to get myself help. I had a car accident in 2006 that changed my life. I had had 8 or more concussions prior to the car accident. After the car accident I had slurred speech, trouble functioning, driving, cooking, basically everything. My personality changed and I was having horrible headaches and memory problems. I started having seizures in January of this year and reached out to a neurologist/movement disorder specialist who is treating my dad for Parkinson's disease/shy-Dragers syndrome. He spent two hours with me and did a through account of my history and neurological testing as well as balance testing. He was the one who diagnosed me with TBI/PCS manifested by cognitive impairment and chronic pain. He also diagnosed REM sleep behavior disorder and nocturnal epilepsy. He wrote me a two page letter to help me get approved for disability. I sustained neck, back, head and left leg injuries in the car accident that leave me crippled physically with pain. The TBI/PCS leaves me crippled mentally. I have since undergone neuropsychological testing and am waiting on the report from that now. This is how I got my diagnosis. I was just being written off as chronic pain, muscle damage, bulging disc problems, depression and PTSD before seeing this neurologist/movement disorder specialist. I am very grateful for this doctor. Things now make sense. Being in the no diagnosis or wrong diagnosis zone is so much worse than having a diagnosis that explains what is going on with you. You know when there is something seriously wrong with you that the doctors just are not catching. Don't give up. Get yourself to a neurologist/movement disorder specialist who is knowledgeable about this condition. Tell them that this is what you think you have. These are the symptoms that fit what you are going through. They do have tests that someone who knows what to look for can tell what is going on from.
Brain

Back in 1997, when qEEG was starting to become validated by multiple separate studies, a single article written in the Journal of Neurology made the claim that qEEG was quackery. Even thought the methodology of the article's author has since been soundly proven false, the word was already out. It is hard to un-ring that bell.

Neuros do not change their minds easily. Since qEEG is promoted by the bio-feedback industry where very few have more than a Master's degree, it is easy to discredit. Plus, the equipment to do the testing is cheap and sold by quite a few 'mom and pop' shops and just about anybody can use it, there is no financial gain by the big medical industries promoting it.

Thanks everyone for your stories.

MiaVita - I was in a car accident in 2010 and have been having issues since. I did neuropysch testing that said I may have had a concussion?? I relate to your posts a lot.

BrainPatch - Your post gives me comfort that the specialists are missing something.

Mark - I will look at the testing but I don't think they would take that seriously.

It was a colleague at work that suggested head injury to me. I researched it and found it fits me.

BM

I never gave up threw hell and back.Ya I might of turned into the nastiest attitude, evil person, the fighter that was front line of combat. But it got me what I wanted a simple diagnosis. I'm not saying to go act like that!I am saying keep fighting to get a diagnosis. If you know your body and the person before versus now....KEEP FIGHTING!These M.D.'s do not know your body, how you feel, what you are going threw in symptoms etc. Did the other party have insurance?If so did you settle without diagnosis?What does your neck MRI say?Is your speech slurred?How are you still working?Please keep posting so we can help you!