Second opinion over

Today I finally got the results of my second opinion as to whether I have Lewy Body Dementia, or Mild Cognitive Impairment.

The last hospital was adamant that I no longer had Lewy Body Dementia, but had MCI, after all these years with the illness, but would answer questions my wife asked about the change in diagnosis

This consultant today at another hospital where a second opinion was being done, said that I definitely have certain symptoms which exist in LBD, and is therefore possible that I may well have the illness, even though I have not deteriorated as fast as I should have done.

In his words I could have a slower burning form of the illness, which could have been slowed down because it was detected early enough and I was given the medication fast enough.

This could also be due to the fact that I never gave up and kept myself busy raising awareness etc and never looked back at what could happen later. 

This allows me to move on rather than sitting in the corner as I have been for the last 6-9 months, as the doctors at the dementia hospital refused to accept that I had the illness, and would not even answer questions as to why the diagnosis had changed.

I know that this diagnosis is difficult, and at the end of the day we will not definitely know  until we are dead and an autopsy is done, but I do feel that this process is made worse these days, because of doctors who do not fully understand the illness but, are fast at making judgments, and assessments, without fully consulting those with the knowledge and experience of the subject
As two other doctors had said before, you cannot simply change a diagnosis without explaining fully why it's been changed.

But as it's been pointed out on many occasions, many doctors refuse to accept a diagnosis which does not fit in with text book requirements and is not in black and white.

Many doctors simply change the termed and names to suit themselves, irrespective of the care for the patients.

While I understand that Lewy Body Dementia is similar to Parkinson's, there seem to be many variations, of each illness, and like it or not, I have been told on many occasions that no two people go down the same route, at the same speed with the same symptoms.

We are to all intensive purposes different, or individuals on individual journies. 

However I am now under a professor of Lewy body Dementia, who said that they are still learning about this illness, and do not have all of the answers yet.

But at least I know that I am now in the right place to get the answers

I also need to have my eyes tested again so that they can check for neurological problems, and Visio perception problems

It's been a very long year, but at least I now feel as if I am moving on and get on with life again, although eyesight problems are causing havoc. 


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