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Need some advice...
frustrated047
Posted: Sunday, December 18, 2011 7:41 PM
Joined: 12/18/2011
Posts: 36


I am 47 and have a preliminary diagnosis of dementia.  I had a stroke at age 25 which showed on the MRI that I just had, of course it was mentioned that the spot was in a weird place.  I had an EEG which was normal.  The neurologist plan is to see me after I have been on 10 mg. of aricept to see if that is helping.  He is holding off on a decision to do a spinal tap until after that visit.  I also have heart issues (skipped beats, high blood pressure).
ffwife
Posted: Sunday, December 18, 2011 9:04 PM

why a lumbar puncture? Did you have neuro psych testing?

 


Lisa428
Posted: Sunday, December 18, 2011 10:11 PM
Joined: 12/5/2011
Posts: 795


Dear frustrated 047,

Hello and Welcome to the AD/Related dementia's Message Boards.  I'm sorry for what brings you here but  I am glad you've found us.

It is very frustrating getting a diagnosis when you are young (especially under 65).

I was diagnosed @ age 53.  Most doctor's need to rule out everything before they will give you a dx of dementia of any kind!

Please, ask your doctor about getting neuropsychological testing done.  It is very important to get a true diagnosis.

Are you seeing a neurologist that specializes in AD/dementia, Memory care??

Please, hang in there.  Come. back to let us know how you are doing. 

Good LUCK.

Peace and Hope, 

Lisa


Ttom
Posted: Monday, December 19, 2011 10:59 AM
Joined: 11/29/2011
Posts: 182


frustrated047 wrote:
I am 47 and have a preliminary diagnosis of dementia.  I had a stroke at age 25 which showed on the MRI that I just had, of course it was mentioned that the spot was in a weird place.  I had an EEG which was normal.  The neurologist plan is to see me after I have been on 10 mg. of aricept to see if that is helping.  He is holding off on a decision to do a spinal tap until after that visit.  I also have heart issues (skipped beats, high blood pressure).

Yep, very similar to my own experience. I had my stroke at age 33. By age 50 I was in the same spot in the diagnosis as you. Prior to the spinal tap the doctor was trying to rule out problems. After the tap he began to evaluate the type of dementia to treat. About the next step should be a NeroPhy evaluation and then another EEG.

 

My disclaimer:
I'm not a professional in this area, only a person with AD that cares about others and can express myself yet. Diagnosed at age 58 in Stage 5, now appear firmly in Stage 4 for now- wonderful meds! I 'm 62 now..

We encourage you to call the Alzheimer's Association's 24/7 Helpline

1-800-272-3900 . Ask for a Care Consultant who will be available

Helpful hints for slowing the progression:

  1. Get Early detection
  2. Start the required drug therapy
  3. Avoid stress
  4. Mediterranean diet with antioxidants and Omega 3
  5. Mental and physical exercise


LATER... Tom


 


frustrated047
Posted: Monday, December 19, 2011 11:07 AM
Joined: 12/18/2011
Posts: 36


Thank-you ffwife & Lisa 428 for your responses.  The lumber puncture looks to identify certain things that relate to dementia/alzheimer's from what I've been told.  I have not really had any in-depth neuropsychological testing, except for one very basic one in the neurologists office, which put me directly into the dementia category according to him. 

 

I do understand how important it is to get a correct diagnosis and that is what concerns me.  I am very happy that I have found this site.  As I'm sure that anyone here knows, it's really hard to realize the deficits that you notice in yourself, knowing something is wrong.  Sifting through all the information out there can get overwhelming, even though I only go to well-known, trusted sites.   


frustrated047
Posted: Monday, December 19, 2011 11:18 AM
Joined: 12/18/2011
Posts: 36


Thank-you Ttom.  Is calling the helpline very helpful? Also, it looks like it's common to describe anti-depressants with the aricept?
Ttom
Posted: Monday, December 19, 2011 11:44 AM
Joined: 11/29/2011
Posts: 182


frustrated047 wrote:
Thank-you Ttom.  Is calling the helpline very helpful? Also, it looks like it's common to describe anti-depressants with the aricept?

Sometimes the Helpline is best, sometimes not so good. If you have an urgent problem they can get you calmed down and headed in the right direction. They are all qualified individuals but should never be mistaken for professionals. Please see you medical professionals!

Yes, it is very common to precribe anti-depressants along with Aricept. Hopefully, if dementia is the diagnosis, Namenda is added shortly.


ffwife
Posted: Monday, December 19, 2011 3:46 PM

The lumbar puncture looks for genetic marker like the APOE 4. If you decide to have the LP. Please, Please genetic counseling! There is much controversy surrounding whether or not people should have a LP done. a genetic marker or APOE does not mean you have or will get AD, it means you are a at a increased risk.

 


SnowyLynne
Posted: Tuesday, December 20, 2011 11:55 AM
Joined: 12/1/2011
Posts: 29


I also had the lumbar puncture.Thought hubby would pass out,lol.........Didn't bother me a bit,told the dr just deaden the area first,he did,,,,
Ttom
Posted: Tuesday, December 20, 2011 12:45 PM
Joined: 11/29/2011
Posts: 182


I'm thinking that a Lumbar Puncture can evaluate a lot of different issues. The prescription needs to be specific. 

 

They were not looking for APOE 4 on mine but found some type of plaques they didn't like the looks of. 


Mimi S.
Posted: Tuesday, December 20, 2011 2:48 PM
Joined: 11/29/2011
Posts: 7035


A spinal tap is one of the very earliest ways now currently available to detect dementia. It will show first in the spinal tap, next on a PET scan and finally on neuro-psychs and fMRIs.

The spinal tap and PET are not widely available. 

However, if the doctor has such means available, why put a patient on 10 mg of Aricept before finding ot if the person does have dementia. And then what type.


Mimi S.
Posted: Tuesday, December 20, 2011 3:44 PM
Joined: 11/29/2011
Posts: 7035


And where did what I had on here before the telephone rang, disappear to?
For the third time:
From your library, get a copy of the Alzheimer's Action Plan by Doraiswamy and Gwyth of Duke University.
I just found a web site involving him: 
Well, it won't let me add a link. So just google Doraiswamy

JAB
Posted: Wednesday, December 21, 2011 12:07 PM
Joined: 11/30/2011
Posts: 740


Just to be precise: 

  

Lumbar puncture analyses are looking for "biomarkers", i.e., biomolecules -- typically proteins -- such as beta amyloid and tau, in your cerebrospinal fluid.  These tests are still very experimental, and the results can be very unreliable. 

  

The APOE4 test is looking for a genetic "risk factor" in your DNA.  This is a blood test, not lumbar puncture.  If you carry the APOE4 allele, you are slightly more likely to develop late onset AD.  However, you can carry APOE4 and never develop AD, and you can develop AD without carrying APOE4.   

  

APOE4 cannot be used to diagnose AD.  It may be useful in predicting whether certain treatments may be beneficial for you.
 

  

"PET" refers to a particular type of instrument, and not to a specific test.  To do a PET scan, a dye is injected into the patient, and the PET detects the presence/absence of the dye in the brain.  The type of dye determines what type of test is being done.
 

  

The type of PET scan dye that is available to the general public helps evaluate glucose metabolism in different regions of the brain.  It may be useful in differentiating between Alzheimer's disease and frontotemporal dementia (FTD) but is not generally considered to be useful in diagnosing AD. 

  

There is a new dye that is still experimental that can detect plaque.  However, the range of plaque that can be seen in the brains of people whose cognitive function is just fine overlaps the range of plaque seen in patients with overt dementia symptoms.  Therefore, many researchers believe this dye will not be useful for diagnosing dementia.