ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My son has an appointment coming up with a great doctor known for her neuro-psyche evaluations. I am hoping to get a look into his brain and plan for what he can do after high school in May.
Who has had one and what did you learn from it?
I'm worried about the long testing for him. Any advice?
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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- I had one and was very disappointed. Actually, I had the screening. It's not at all what I thought. I thought it would tell me HOW I learn, what methods would be best for MY brain.
Not at all.
It this doctor LL? If not, can you find one who is? Unless your son has reached remission? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I had one done and it showed i was normal. I was normal before i got sick , It showed alot of things i was not , They recomended a lot of things , anti depressants , etc . This was before i ever found a llmd . I did not need a psychologist to tell me my why i was feeling the way i was .To me was a waste of time .
Posts: 238 | From Where | Registered: Aug 2012
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posted
For me, the neuro-psych evaluation was a godsend. It helped me to confirm that the cognitive deficits I was experiencing were not something I was making up to get attention (hah!) and that indeed I had lost a lot of ground in this regard.
Findings: I had lost 12 IQ points, but the deficits were in specific areas of functioning, most notably:
1. Auditory encoding: my hearing was perfectly normal, but the process of taking in what I was hearing and actually understanding words was impaired.
2. Sequential logic was out the window; ie. I couldn't perform the simplest of tasks (going to the laundromat, following a recipe, etc.) because I couldn't put the steps in order.
3. ADD-type symptoms: I could not focus and became very agitated when asked to slap a button every time a light flashed--behaviors indicative of ADD.
4. Speech deficits: While I could formulate ideas and translate them easily into writing, expressing myself verbally ("out loud") was almost impossible. Visualizing and writing skills remained unimpaired, but organizational and speaking abilities had been negatively affected.
For me, these results were truly helpful. Prior to being afflicted with Lyme, I was a magna cum laude graduate with degrees in biology and genetics. I could apply myself serenely for hours to even the most complex of academic challenges. Now I can barely figure out how to wash my clothes or make a casserole.
The tests took a full five hours to conduct--I had to break them into two sessions because my fatigue would not allow otherwise. Your son may find this to be quite taxing, but I hope the testing will be worthwhile for him. He can gain a realistic understanding of his current aptitudes and adjust his expectations accordingly. Not always fun, but necessary.
The best of luck to all of you!
Posts: 14 | From United States | Registered: Aug 2011
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I did one of these tests. The doctor who did it wasn't too great in my opinion, but it did prove to me I am stupider than my pre-Lyme / whatever illness days. My memory recall was not what it used to be. Her reocmmendations weren't of any use really.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Judie
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posted
There are many factors that can effect a neuro-psych evaluation.
Here's an article written by a woman who does them. About half way down it talks about medical issues and what's checked. It might help you know what to expect:
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Thanks so much for the replies everyone.
Merinel- I appreciate your time to type up your results. I suspect your number 1 and 2 and I know number 3 is a HUGE issue for him.
Shutting the refrigerator or turning off the car in the garage is not an automatic thing for him. He can't take care of keys, glasses, wallet or clothes. He has no sense of time either.
I need to know what he hears and how he thinks, because at age 17, this is not normal. He is about as frustrated as I am.
Judie- I will read your article. Thanks!
Our neuro-psyche comes well recommended and is in network. Imagine that! I am hopeful, but I understand the limitations of the testing.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
I am going for one soon as well. Not sure if I have brain damage or Lyme or both at this point.
There is (although I haven't been to him yet), a neuropsych doctor recommended to me who specializes not only in brain injury, but in tick-borne/degenerative disease cognitive deficit identification. Supposedly, he can determine the deficits and what their origin and cause were-- whether it be Lyme or other processes.
I know we don't put doctor's names up here, so someone can PM me and I will gladly give the name. My appointment is March 9th-10th.
Also, anyone have any hope that if these cognitive deficits ARE from Lyme, they will improve with treatment? Or do they just stop progressively getting worse?
Posts: 36 | From Connecticut | Registered: Jun 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Spirocheta, if the cognitive deficits are from lyme, they can all go away with good treatment. I got my normal brain back. And, I had 2 UBOs (unidentified bright objects) show up on my brain scan prior to lyme treatment.
I have a friend who had had such brain "damage" that she had to quit her professional job and become a bank teller. Due to memory problems, she was about to be fired as a teller when she got to a lyme doctor and got a 3 months leave of absence under Federal law due to illness.
In that 3 months, the doctor was able to restore her brain function enough that she could return to work and perform satisfactorily.
This lady was very concerned that she would never get her normal brain back. She was a highly educated woman. At the first lyme doctor appt, she asked the doctor if she thought she would get her normal brain back. The doctor said, "If you have had periods of brain clarity within the last year, then I can tell you that you will get your normal brain back."
This lady had NOT had any periods of clarity within the last year. Still, she eventually got rid of lyme and coinfections and got her normal brain back! She was so happy, she emailed everyone in her email to tell us the good news. This is a lady who kept missing her exit while driving home. She could not remember simple bank rules and was costing the bank money (not putting holds on funds and cashing bad checks, etc.) This lady had likely been born with lyme and was 50 years old when she found out that her "fibromyalgia" was really lyme disease. (Her mother also had "fibro" and so did her sisters and her daughters.)
So, that gives everyone hope.
Posts: 9931 | From Maryland | Registered: Dec 2007
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dbpei
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posted
Thanks for this encouraging story, TF. I have been being treated for lyme and co for over a year. I recently had a follow up brain MRI that still shows 1 lesion. Was hoping it would be gone... but at least there were not more!
I would agree that if you are going to have a neuro-psych eval. done, to try and go to a doctor that is Lyme literate or at least recommended by your LLMD.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
That is a very encouraging story!! I have my fingers crossed for everyone here!
marinel- Based on my own assessment of myself, those deficits you listed are EXACTLY the same as I'm experiencing. The verbalizing one is the worst, because it's not that we can't speak, it's that I can't come up with ideas fast enough or "hold them in my brain to formalize the speech." So frustrating!
Posts: 36 | From Connecticut | Registered: Jun 2012
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I met with the neuropsyche today and she took a very thorough history. She is requesting medical records from main docs. My son will test with her in April. I then will meet back with her once her report is finished.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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