Although physically I no longer have Lyme symptoms, neurologically, I do. I have difficulty expressing myself, and I get very frustrated when I'm trying to get a thought across. It's subtle enough so that I can get by at work. It's actually become an amusement to my coworkers when I can't think of the word.
Someone suggested neuropsych testing, but I'm not sure I'm bad enough to make it worth it. Has anyone had this done?
Posted by bettyg (Member # 6147) on :
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yes, many of us have had for SSDI, disability insurance, app process to get social security $$ !!
most really show where your major weaknesses are.
when i had mine; they were $1000 - $1200 ! that was 3-4 yrs. ago; more now i'm sure.
are you wanting this to apply for disability?
Posted by Hoosiers51 (Member # 15759) on :
I did fine on my neuropsych testing, even though I have bad cognitive problems.
My main problems include: reading is very taxing on me, feel dazed, thinking takes a lot of effort, etc.
But I think the main thing I've discovered is that it's not how "well" I can do on these tasks when I am tested on them....it is how much they fatigue me afterwards.
The test doesn't ask at the end, "Now, how worn out are you from having to use your brain?" or "did that make you irritable?" or "could you do this everyday?" (of course it doesn't...i'm just bringing up, in a perfect world, what the test should reflect)
It's like, yeah, I can get a good "score," but for the next two days, I'm physically and mentally "wiped out"!!!
Besides, they switch between tasks a lot....so if you have problems doing any cognitive task for too long, it won't reflect that.
I even, in brain scans, have lesions, but did fine on my testing. That just goes to show you can still perform well in one "instance", while feeling horrible when trying to do it a different day, or under different circumstances!
I didn't find the testing to be helpful for anything, personally. I did it because I had to.
Posted by Alv (Member # 15192) on :
HI hossiers I agree compeltly with you.
But BEttyg where did you get it done for $1200 ..
I asked last december for my son -and it was $4000 out of pocket ...Should have been done From DR S L in NY /MA only where he has 2 oofices.No ins wil cover it.CAn not afford $4000 for just a test that ..still he has to go to school not getting disability .
Do you know a cheaper place?
Posted by lymednva (Member # 9098) on :
I had it done in 2002 for around $750, and this metro area is EXPENSIVE! I think the key is finding a good psychologist to do the testing.
This is where contacting a local support group and talking to people who have done it for either SSDI or LTD can help you. The good attorneys will not end you to someone who is not top notch. They want to win your case!
The guy who did mine actually stopped me midway through because he could see I was just decompensating rapidly at that point.
He said it would do no good to go on. Of course he noted that in the records, which helped me, because if I couldn't do that stuff for over an hour, how could I work?
I was amazed at how detailed his report was. He told me things about myself that I had no clue were going on. So it was helpful to me in that way.
As a teacher I was already comparing myself to the worst learning disabled students I had taught. My processing skills are a mess, and some are just like the wires are crossed.
Just last week I was doing some reading for an online self-help course I am taking. It is aimed at people with CFS/FM, but as a moderator for some of the other courses I thought would take it, since the symptoms are the same, just a different dx.
I read for about 45 minutes and had to stop. I was completely exhausted. This was easy reading, and answering questions, doing self-ratings.
It was not new material for me. But still I found it so exhausting I had to stop and take a break. I finally went back to it several days later.
This is not unlike what happened to me in my testing, even though I have now been in treatment for Lyme for over 2 years. I know that after fatigue my neurocognitive deficits are my worst problem.
Hope this helps.
Posted by InADaze (Member # 7711) on :
I did neuropsych testing. I get the preliminary report this week. Yes, mine was also $4000, but it is a very in-depth assessment.
I did mine to support disability. However, it was an eye-opening experience just doing the tests. During some of the tests, I could really feel how much trouble I had thinking things through.
Honestly, I did not expect to have difficulty with logic, since it has always been a strong point of mine. But, when they asked me the logic questions, sometimes it took me a full minute to puzzle out if A went before B. This relieved some of my stress about why I don't always understand my husband.
Cognitive issues are real, and can be truly debilitating. Consider, if I have trouble with logic, how can I make an important decision at work? If it takes me 10 times as long as the average person to get an answer, I would do 4 hours work in 40 hours!
If you feel you are having cognitive issues, and can afford the fee (sometimes covered by insurance), I do recommend it. It will also give you a point of reference to see improvement.
Good luck!
Posted by sixgoofykids (Member # 11141) on :
My daughter had it done (she has Lyme). Her school psychologist was willing to do it for me (he's from CT, so he's Lyme literate). It was free.
Posted by cantgiveupyet (Member # 8165) on :
i had one done at a discount thru my attorney.
Are you looking to go out on disability? Do you have disability thru work?
I think it is good to have one done, if you are looking to go out on disability, i would suggest contacting an attorney and using one of their dr, or maybe your LLMD knows of one.
Posted by ssmillik (Member # 9635) on :
Hi, thanks for your responses. No, I'm not planning on going on disability. Someone suggested it because I have trouble explaining things. Eeks, if it costs that much money, forget it! I thought maybe insurance would pick it up.
I don't think I'm bad enough yet to qualify for disability, but I thought I'd do it just to find out. Well, not at $2000-$4000.
Susan
Posted by tailz (Member # 10014) on :
No, but I'm sure if I had it done, they'd rewrite the medical books.