Monday 25 May 2015

Rediagnosis from one dementia to MCI

A lot of people are finding these days, that their diagnosis is being changed, from one dementia or another to Mild a Cognitive Impairment.

This I understand is because things have moved on these days. 
Years ago you were diagnosed as having Alzheimer's or Dementia, going by your symptoms at the time. But it is now recognised that if you were diagnosed 15  20 years ago and have not deteriorated, as  expected, you no longer have that illness, but have mild cognitive impairment.

This causes many problems because some people have the scan results to prove, that their brains have shrunk to the stage that there can be no other diagnosis available.
In my own case we have letters to prove that my brain has shrunk, more than it should have done for my age

But this leaves some doctors arguing about the true diagnosis you should be given.

This is why these days you are initially given the diagnosis of mild cognitive impairment to start with, and then if you deteriorate you are told you have one firm of dementia or another.

I personally do not understand this because there are quite a few well known people around the world who have had dementia for up to or over 20 years, and are still going well.

I understood that this was because they remained active and never stopped, but a consultant I came across recently rubbished this.

In there words if you have not deteriorated within 5-10 years, you never had it in the first place?

 One doctor told me recently that this is down to specialists splitting hairs, about the definition of dementia, the same as gardeners argue about a true type of Rose?

But this does raise concerns, because many like myself lost their jobs etc, after being given a diagnosis of Lewy body dementia etc, and are now being re diagnosed as having MCI.

The symptoms have not changed, the problems are the same, just the title has changed. 

This then leads to other knock on problems with things like the driving licence, holiday insurance, etc as people rightly want to know why the diagnosis has changed, and why you are taken off the medication etc.
In my own case the DVLA have dragged out returning my driving licence, which should have been replace on January 5th of this year, and 20 weeks later I am still none the wiser.

It also leads me to winder what happens if and when the medication is stopped,  and you deteriorate faster than before. There is no going back again. 

 Perhaps one day things will be a lot clearer for all including the patient to understand.



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