symptoms decades later? wrong diagnosis?
 

For the last 7 years Ive been trying to get a definite diagnosis oh my problems. One psychologist believes it to be post-concussion but there has been nothing definite. My GP is not interested in a diagnosis, only in treating the symptoms which irritates me to no end.

1st concussion - 1985 - age 5 - slipped on ice at school and hit the back of my head. Blacked out for unknown length of time, woke up at my desk, could hardly see, mostly black. Was scared and crying and was walked to nurses office, began throwing up in hall along the way, lost consciousness again for unknown length of time, woke up in hospital room, periodic vomiting but could see, was in observation for unknown length of time.

2nd concussion - between 1987-88 - age between 7-8 - hit by line drive baseball to the forehead (was playing 2nd base). knocked unconscious for unknown length of time. woke up crying on my hands and knees, mother picked me up, hospital said she didnt need to bring me in but to keep me under observation at home. vomiting at home.

3rd concussion - not entirely sure when, around 12-13 years of age, sledding accident. hit on left side and right side hit adjacent child's head. knocked out for unknown length of time, at least a couple minutes. walked home, went to bed, had vomiting.

never once had I ever had any imaging, no x-rays, nadda...course in today's age I would have probably undergone a CT scan or something.

So now I am 34 and experience all the symptoms of post-concussion. My GP thinks it is possibly PCS, one psychologist does, one neuropsych does not, cant remember what the other one thinks, . I've had two neuropsych evals which say mild ADD and anxiety....first one says general anxiety and 2nd one says performance anxiety. Each done by different psychologlists. I've had an MRI with volumetrics that was "unremarkable".

Nobody has been willing to send me for an EEG or PET, and I know SPECT is not covered by insurance.

The sad part is I do pretty well during the neuropsych testing but it is in a nice quite, stimulus free environment. Get me out in the "working world" and my performance drops considerably, but there is no way to test for that.

Ive tried Adderall, Adderall XR, Ritalin, Ritalin SR, Strattera, Provigil, Antivert, Vyvanse, Dexedrine, Intuniv, Wellbutrin, Wellbutrin XL, and a couple others I dont remember. Also tried Lexapro, Celexa, and Zoloft by themselves or in combination with the ADD meds.

None of them seemed to help. The ADD meds made it worse, made me hyper and then more irritable when they are wore off. The SSRI's just seemed to cause nothing but sexual dysfunction, felt no change after 2 months.

So now Im just on my metformin, nothing else.

Any thoughts, or inputs? Considering filing for SSDI since I cant hold down a job, keep forgetting to do stuff or complete tasks which gets me canned after awhile.

Ruthven78,

Welcome to NeuroTalk. Sorry to hear of your rough concussion history.

You don't mention your main symptoms other than difficulty staying focused and memory.

With the myriad of tests and NPA's you've had, you should have lots of interesting information. Psychologists and NeuroPsychs are known to often have a bias against PCS.

If you could post more information about your symptoms and possibly NPA results, I could explain some of the diagnosis and possible misdiagnosis.

The lack of imaging is not uncommon. Most of the CT's done are to protect the doctor. Without symptoms that indicate a more serious injury, you were treated like most concussions.

A PET or SPECT will not likely show much either unless you hold to Dr Amen's ideas of SPECT imaging.

I've had multiple MRI's, an MRI/MRA, and a SPECT. Nothing remarkable observed.

If you want to forward your NPA reports and scales to me privately, I can give you some ideas to consider. If you left click on my name, there should be a PM and email link. If not, let me know and I will find a way to contact you.

I agree with the quiet sterile environment of NeuroPsych Assessments. They do not show a real life environment. I had my first NPA in an environment with visual and auditory distractions and the NP was dumbfounded when I complained or reacted to them. He did not understand my struggles. The second was in a sterile environment. I did a little bit better but not by much.

Both NP's exposed their bias against organic brain injury and tried to say I was malingering. I score almost perfect on the non-malingering tests and they chose to ignore that test.

So, NPA's need to be understood in the context of bias and other mitigating issues.

I assume you are a female by your screen name. If so, have you had any hormone analysis done? It can also be helpful.

btw, If you have been not earning more than $1080 per month, go ahead and get an SSDI application started. They can take a while depending on your local office case load. Mine took almost 3 years to get approved.

More later after you have posted more about your symptoms.

My best to you.

That is just absurd to me! How could someone professing to be an "expert" in the cognitive effects of mTBI (all kinds of TBI really....) not understand this!

I know that it must be difficult for laymen to understand because I try to explain it to people at work all the time. I usually try to explain that I'm having trouble when asked to do something because of the ambient noise that's present - my brain doesn't filter background sounds and stimulus the way a normal person's does. And they tend to just accept what I'm saying, allowing me to close a door, or surrounding people hush or something like that, while everyone looks at me like I have two heads. If I didn't actually produce the effect they wanted, I'm sure it wouldn't fly as much as it does. But generally speaking, shortly after getting the room abnormally quiet, I'm able to fix whatever problems they're having, so they roll with it. :D

That first NPA doc was beyond belief.

First, I complained about trying to stay focused looking at him with the entire wall behind him covered by plaques with various diplomas and certificates. He did not get it.

Then, later when I was doing auditory memory testing, there was a leaf blower outside. I had to stop. I complained about the distraction. He actually wrote about my complaint and suggested I was over-doing it. He did not have a clue.

I scored 48 and 49 out of 50 on the two validity tests. 37 or lower shows some possibility of malingering. He still diagnosed me as faking it. He said my high intelligence 90 to 99+ percentile was inconsistent with my 10% processing speed and my 5 and 10% auditory and visual memory scales.

So, one can see why I researched the NPA tests to understand them.

The 2nd NPA scales were very similar to the scales on the first NPA even though there was 5 years between them. It basically showed no improvement. I was much better functioning due to work-arounds and other accommodations.

The primary value of the NPA's was to validate the struggles I was having. I could finally accept that my memory problems were real.