Neuropsych testing

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dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 6/18/2009 9:02 AM (GMT -7)   
My doc is kind of pushing me towards doing some cognitive testing.  Part of me wants to do it so I can find out how its all going (fogginess, forgetfullness, cognitive function) but part of me doesn't because I'm scared to find out. 
 
I also have a full time job with a lot of responsibilities and I don't want to know if I am declining.  When my doc told me that it is the same test that they do for Alzheimer's patients for diagnostics, my immediate reaction was no way - not doing it.
 
Anyone had this testing and how did you feel about the results?  Should I just go ahead and do it, are my reasons silly or what? (yes, I can be irrational sometimes)

edited for spelling... how ironic redface


Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid

Post Edited (dbab) : 6/18/2009 10:48:11 AM (GMT-6)


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/18/2009 10:04 AM (GMT -7)   

Hey hun, fears are fears, doesn't matter if they seem rational or not. We all have fears. I tell ya what I'll take you test if you take my colonoscopy?

No but seriously I would never tell you you shouldn't be afraid. I will give me my opinion though on what I would do in your case. If the dr. wants it done get it done. One major reason is that having it hanging over your head is going to cause the symptoms you mentioned about fog and forgetfulness. Stress will bring on these episodes. So if for no other reason then to set your mind at easy.  Then there are the medical reasons.  Some times some of the drugs we are on can cause these symptoms a well. It could be just a matter of changing meds. thirdly, if you do have something going on the sooner you get it dx'd the sooner you can get treatment. There are meds out there that can be taken to slow down the progression even if it doesn't cure the problem.

You need to take it head on. You are tougher then you think. If you have a good job with responsibilities it says that you have a lot on the ball. You have been through a lot an continue to get up swinging. I have no doubt you will do it again. If you get scared we are all here to hold your hand.

Let us know what you decide.

love ya

carol

p.s. my dr. said my fog is probably from taking xanax for so many years and because I have sleep apnea and don't use my cpap. (who knew) confused
 CAROL
 scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Detrol LA,spironal,Lisinaprol,furosemide,azithromiazin,plaquanil,pottassium,Citrocal,vicodin,percocet,tons of inhalers.
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


CATZZ
Regular Member


Date Joined Apr 2007
Total Posts : 39
   Posted 6/18/2009 10:27 AM (GMT -7)   
Hello there your reasons aren't silly this stuff is scary....My neurologist wanted the test done and I put it off for awhile because I didn't want to know either. Eventually though I felt that if I did do it I might have a baseline for comparrison purposes, also I want the docs to have all the info they need so that my treatement is where it needs to be.  There is a scale they use from 0-96. 96 being the sharpest best you can be and zero being the worst. I scored a 48 which was a little upsetting. I had old school test scores that the doc found useful to compare what I had to what I had lost. He told me that I had lost a minimum of 20 IQ Points, which was hard to hear. Apparently I have one of the worst attention spans he has seen, as well as many short and long term memory issues. He called me "quite impaired".  He told me these results could be caused by the lesions in my brain, or by simply having multiple diseases. He said that was for my neurologist to decide. On the bright side he did not feel the damage was permanent he felt that if I got better my cognative issues would get better too. I found the whole thing validating in a werid way because I really had been feeling stupid and it was starting to scare me. People would tell me we had entire conversations that I never remembered having. Now I feel like I understand whats happening to me and it is not so mysterious or scary anymore.  Good luck and let us know what you decide to do.
:-)  Mellissa
 
Dx:  Lupus, Hashimotos Thyroiditis, Peripheral & Autonomic Neuropathy, Fibromyalgia, Arthritis, Erythromelalgia, GERD, B12 & D deficiency
Rx:  Plaquenil, Levoxyl, Lyrica, Flexeril, Tramadol, Hydrocodone, Lasix, Lunesta, Ativan, Pepcid, B12 injections , Vit D


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/18/2009 10:46 AM (GMT -7)   
Thanks Carol and Mellissa... your words are very kind to make me feel better about being scared. I have been so embarrassed lately because of all of this.

This is a very hard subject for me and I wish I could make light of it like others and like I can do with other symptoms. It always sticks in the back of my head "how far can this go?" I do joke about it when other people notice but deep down I feel very sad. I am going to seriously give it consideration (the testing) because deep down I know its better to know.

Thank you Mellissa for sharing your experience with me.
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 6/18/2009 2:05 PM (GMT -7)   
When I first got sick 4 years ago I spent several months in hospitals including 5 weeks in a rehab hospital because I was completely crippled by a muscle disease, polymyositis.  I needed PT, OT and speech therapy (could not swallow) and the speech therapist wanted to give me cognitive tests.  I responded that my problem was that I was crippled and had nothing to do with my brain.  Was I surprised.....the tests showed that I had short term memory loss and concentration problems.  What the tests did not show was that I was much more emotional and had difficulty dealing with stress as well. 
 
All of these areas have improved over the past 3 years but there is no question that lupus impacted my cognitive powers.  It is much better to know what your problems are and learn strategies to deal with them in day to day life.  I used to be a list maker who never needed them but today I do.  I never forgot anything.  Today I make sure I am prepared for anything I need to do and try not to solely rely on my memory.
 
I would encourage you to take the tests.  If you do not you will always wonder and not do anything to help yourself with new strategies or exercises to help.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 50mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 6/18/2009 3:44 PM (GMT -7)   
I have had these tests and they were very helpful for me. And nothing to be afraid of. They help distinguish between what is real loss and what I was imagining and made all the questions and issues regarding lupus fog, memory, etc go away. I wish I had gotten a baseline test much earlier in my disease.
Lynnwood, Co-Moderator: Lupus Forum
Life is far too important to be taken seriously. - Oscar Wilde, 1882


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/19/2009 8:32 AM (GMT -7)   
Thanks Bill and Lynnwood, and for also sharing your experiences. You are right, it is better to know and I just need to do it!

I just emailed my rheumy to let her know that I am for doing this. I'll let you all know how it goes. :)
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid

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