Diagnosis downgraded?

[kennc]

Hi in 2003 I was diagnosed as having early onset Lewy Body Dementia, and 3 months later after moving home, we found that the hospital had lost my notes, so I had to go through the whole process again at a different hospital, leading to the same diagnosis.

I was then put on Exelon which helped me to manage some of my life and gave me freedom.

However my consultant has now retired and I have now been told by my new consultant that she disagrees with both sets of diagnosis results, and now says that I have Mild Cognitive Impairment?.

This has left me very distressed as I can not work out how two sets of procedures can be wrong, and how this can be downgraded.

I started to wonder whether the medication is working so well that this has caused it, or if there is something else behind it.

I still have may of the original problems, so why the change.

Does any one else have this problem

Ken

[MaryCanada]

Hi Ken:
That must be so totally frustrating, to say the least.
I was diagnosed in Dec/05 with alzheimers, then in Sept/06 with the language presentation of FTD.
I've been on aricept and namenda since May 06, and spend ten to twelve hours a day on my computer....researching stuff and doing brain exercises.
My neurologist is totally baffled because I have improved over the last 3.5 years...not gone downhill.
She has pointed out that no one really knows what is going on until autopsy....they can only guess from the various testing and scans.

According to all the research I've found, they think we can actually reverse the damage by doing brain exercise. My theory is I'm making new paths through the mess in my head, so I'm able to access information as I need it.

I will say things improved dramatically once I added the namenda to the regimen.

Good luck to you....and just keep on plugging along!!!
_________________
Hugs
Mary
www.simplesite.com/mothermary

[kennc]

My wife has now said that this doctor has gone back to the original diagnosis of Dementia with Lewy Bodies, so I am now totally lost, as I no longer feel that I can trust her again.

If only she would stop changing her mind, then I would be able to settle down and relax again.

I often wonder if these people really know how much stress they cause when they do this.

I will not be alone with this.

Ken