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Doc says EOAD is always rapid onset!
Zen
Posted: Thursday, November 29, 2012 4:34 PM
Joined: 7/14/2012
Posts: 55


Am I wrong, or is this nonsense?  Finally saw a new doc yesterday, in Geriatrics this time, and he told me I can't have EOAD because I have been having progressive decline for "30 years" (I actually told him a little over 20) and EOAD is always rapid onset and rapid decline.

 

My son isn't being all that helpful with this.  He doesn't want to research anything on his own and I am no longer capable.  My speech has deteriorated even more lately and I can no longer make sense of technical information.  The other day I couldn't remember what year my son was born.  I can't remember how old he is, I have to figure it out new every time.

 

To be fair he is very stressed with job hunt pressures and having to write a paper for publication that his co-author dropped out on after 6 months without telling him and it is due in a few months and she did none of the work on it that was supposed to have been done (research paper for publication in professional journals).

  

But I can't figure this stuff out on my own anymore.  I THINK this is wrong - that EOAD has to be rapid onset and rapid decline - isn't it wrong?  Have I landed with yet another dud doctor?

 

He also got 2 pages while he was with me and in the middle of trying to describe what was going on he took the pages and left the room for several minutes.  He didn't want to let me finish telling him what he had asked about before getting the page, but brushed me off with "I can't spend much more time with you, it would detract from what I owe my other patients".  But apparently going to answer phone calls is OK on my time.

 

Then he told me my MRI had been the cleanest he had ever seen - does that mean it can't be Alzheimer's?

 

I'm going down the drain and I feel like they're just turning the water on faster!


Iris L.
Posted: Thursday, November 29, 2012 6:21 PM
Joined: 12/15/2011
Posts: 18502


I'm sorry, Zen, he does sound like a dud doctor--and in geriatrics, no less.

I believe some patients with familial early onset AD have a fairly rapid onset and rapid decline, but the majority of patients with ordinary AD have a gradual onset. 

I myself have developed memory loss fairly suddenly, over a course of a few months, in the summer and fall of 1987.  I was told it was due to depression/anxiety.  Now it is 2012, twenty-five years later.  I still have memory loss and executive function problems,  If I were not using Exelon patch and Namenda I would be much worse off memory and speech-wise.
 

 

Antidepressants helped me a bit in the early years, but the memory meds have helped the most in the past 3 1/2 years.   My diagnosis is not AD but cognitive impairment.

Would you consider asking for a trial of  memory medication?  You can make note if there is any improvement.

Did the doctor tell you to come back?  What is his plan for you?  Is he ruling out the medical causes of cognitive impairment?

It's very hard to proceed with a diagnostic workup without someone helping you along.  I understand.  It was hard for me and I'm in the medical profession.

If this doctor is of no help, try calling the Helpline for a referral to an Alzheimer's disease specialist.

Iris L.
 


Mimi S.
Posted: Thursday, November 29, 2012 7:43 PM
Joined: 11/29/2011
Posts: 7027


Hi Zen,
I'm so sorry you went through this.
His diagnosis was weird. The only difference, not counting the familial that Iris discussed, and we older people, is the age at which it begins. 
There is an old saying that I heard Maria Shriver quote: When you've seen one Alzheimer's patient, you've seen one Alzheimer's patient. There are too many differences. 
There is a good book that you can get at your library. Ask them to inter-library loan if they don't have it. 
The Alzheimer's Action Plan by 
Doraimsy and Guenther of Duke Univ. It show how you should have been tested.
Do you have a neuro-psych where you answered lots of questions? Some may have been on the computer, some blocks, memory questions, draw a clock? 
MRIs are usually given to rule out a variety of things that might cause your symptoms. They seldom show anything til mid stage. there are other scans that do show clues, but the normal doctor does not use these. They are used in larger institutions, often those involved in research.
In your area is there a large University Hospital that has a dementia or Alzheimer specialty? Is there anything like a Memory Clinic?
If you go for a second opinion, that place might or might not want to repeat some of the tests, not usually scans.
Were you given blood tests?
Please stay in touch!

Myriam
Posted: Thursday, November 29, 2012 8:56 PM
Joined: 12/6/2011
Posts: 3326


Hi, Zen. I have EOAD, which runs in my family. I first notice symptoms in early 2009, but I'm still between stages 2 and 3 (even though I've had 2 major surgeries in the last 7 weeks). Everyone that I have known in my family who has/had EOAD did not experience rapid decline. Great advise from Iris and Mimi.
Iris L.
Posted: Thursday, November 29, 2012 11:26 PM
Joined: 12/15/2011
Posts: 18502


Mimi is right.  "When you've seen one Alzheimer's patient, you've seen ONE Alzheimer's patient!"

There is much variablity in Alzheimer's disease and dementia.  Doctors really have only begun to study early dementia because they haven't been looking for it. 

The baby boomers are just getting to the age when dementia becomes prevalent.  Then the researchers will have large groups to study. 

For now, we on this board know almost as much as they know about early dementia, if not more.  We are the actual patients and we know what is happening with US!

Read the book Mimi suggested and check things out for yourself, Zen.

Iris L


Katrinka
Posted: Friday, November 30, 2012 1:54 PM
Joined: 9/10/2012
Posts: 2703


I strenuously disagree that early onset is always rapid... hate to disagree with somebody's doc.  I mean, I think it CAN be rapid and some of the info I read about alz when my husband was diagnosed seemed to indicate that early onset progressed more rapidly than with older folks, but in my husband's case I think we can thankfully say that is not true, either.
John50
Posted: Sunday, December 2, 2012 8:01 PM
Joined: 3/14/2012
Posts: 140


As has already been said it is absolutely WRONG that all EOAD is rapid. While I have an atypical form of Alzheimer's that my father also had I believe he started with similar problems to mine (although his went undiagnosed early on) in his 40's yet he didn't have major memory problems until his 60's and lived until almost his 81 st birthday when the disease finally took him. His quality of life was decent until his mid 70's so it was anything but rapid even though as with me there were symptoms at what would definitely be considered early onset. I myself was first diagnosed at age 48 and am 53 now with a very mild progression of the disease so if definitely isn't rapid. I am living proof.
John50
Posted: Sunday, December 2, 2012 8:04 PM
Joined: 3/14/2012
Posts: 140


What I meant to say is it is wrong that it is ALWAYS rapid, it can be rapid but I have seen much more than just my father's and mine that were not rapid. It is hard to imagine any doctor making that statement. I would definitely suggest checking around for other doctors.
carrie4141
Posted: Monday, December 3, 2012 10:21 AM
Joined: 12/2/2012
Posts: 289


For me with hubby, it FELT rapid, but after the official dementia diagnosis I began reading and researching and in my obsession even plotted a timeline of what things had happened in the course of our marriage and figured out that there were early symptoms that were passed off as flukes as early as 5-6 years before anybody even thought of doing any testing. Dave has been on anti-depressant therapy for the majority of our marriage, and I do believe he suffers from it, but many of those symptoms also cross into dementia symptoms so now I am thinking that its not a true rapid decline, its just way more noticeable as we have become better informed. Sort of like where the expression 'Ignorance is bliss' came from, although we all know thats not really true. Just because we don't know something is going on doesn't mean it isnt.


Kathleen6034
Posted: Monday, December 3, 2012 8:40 PM
Joined: 12/3/2012
Posts: 5


Hello Zen

My only experience is personal - my husband has EOAD and so did his father.  My husband was diagnosed in 2004 and is in mid stage - still able to care for self but gradually declining.  He's now 62 yrs old.  His father had the diagnosis for about 22 years before passing away at age 63, so I believe your doctor was not well informed.  I also think the other posts give good advice - - I believe the medications they have now do help for a time - i.e. Namenda, Galentamine, etc.  

Take care