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Questioning Diagnosis
Posted: Friday, November 11, 2016 5:22 PM
Joined: 11/11/2016
Posts: 1

My DH was diagnosed in 2013 with EO dementia/alzheimer. I read as much as I could on the illness but did not find anything that really matched his symptoms. At first we were told he was having psychotic episodes. The first "episode" happened in 2005 but was mild. Then in 2007 he had another episode and I really thought he had a stroke. He became very quiet and would not go to the hospital by the next morning he was totally delusional, paranoid, at times a suicidal. I finally got him to the hospital but was never given a definite diagnosis. He was in the hospital for over a week and was put on a strong intravenous antibiotic and taken off all things by mouth because they found air in his chest cavity and thought he had a tear in his esophagus. He was better by the time we left but was still a little paranoid. In 2011 he started acting strange eventually becoming very paranoid and emotional. We took him to the ER where they determined he was dehydrated so hooked him up to an IV then took him for a CAT scan. They thought he had fluid on his brain so sent him to a larger hospital. This hospital put him in the psych ward first then on the regular ward when they found out why he was sent there. They ended up giving him several different psychiatric drugs that made the situation worse and sent him home. His delusions lasted for approx. a year before subsiding and he was able to function in a semi normal way. In 2013, we lost our youngest son and I started noticing small changes but no one would listen to me and insisted I allow him to go to a family reunion I believed he was not ready for. He had a total breakdown when he arrived to travel with his brother and nephew to the reunion. They called the police and had them take him to a mental hospital in that town. This hospital diagnosed him with EO dementia/alzheimer. They put him on medication that controlled the problems for a while. A few months ago I started noticing changes again and immediately started trying to find help. I have now been made his guardian because of his behaviors. This week I took him to a clinic to be evaluated by someone who was supposed to be a great neuro/psychiatrist who deal specifically with alzheimer and dementia. I had all his reports sent to this doctor (a stack about 2 inches thick) and was very excited at the thought of finally getting answers.  The doctor shuffled in (he is in his late 70's or early 80's), sat down, looked at my husband and, very kindly said, "You do not have alzheimers or dementia. You have early childhood trauma." I was stunned. He admitted he had not looked at my DH records because "it is so thick." Now, after this very lengthy story, my question is,"Can a person with dementia or alzheimer have episodes like this and then be fairly "normal" for a long periods of time?" Is this dementia or is it something else>
Posted: Friday, November 11, 2016 7:12 PM
Joined: 12/2/2015
Posts: 1018

I'm sorry for your situation. I have Dementia with Lewy Bodies and early onset Alz, which is to say that I'm messed up good. Anyway, the one constant that exists in this world of dementia is misdiagnoses and screw ups by the medical professionals. Given what you have said, I would recommend that you find a nearby hopefully close by major medical center that has a memory assessment clinic or program. Go there and find out what really is going on. You can take your spouse to 10 local experts who will give you 10 diagnoses. Get a Pet Scan if at all possible. Given what you have described, I find it hard to believe that your final diagnosis is even good enough to equate to malpractice. Good luck, because those of us with these diseases have a terrible time getting a solid diagnosis by someone who actually knows what they are talking about. Really, good luck.
Posted: Friday, November 11, 2016 7:41 PM
Joined: 7/24/2015
Posts: 3020 are asking really good questions.  In order know if dementia, you need the 4 hour neuropsych test...that will show if there is decline in the specific areas typical of dementia. 

That said, FLUID ON THE BRAIN...Normal Pressure Hydrocephalus causes dementia-like symptoms....and all kinds of strange things, as it is too much water in the brain causing brain damage. 

It is important you get that checked our right away!  And, clearly by a more competent doctor.  My guess is you will need an MRI, and a spinal tap (ask for the pressure test).  If the spinal tap relieves some of the symptoms (you, yourself) will know you are on the right path...irregardless what the doctors say.

Also, the psych breaks...sound medication related. 

It can be very hard get a good doctor, so many of them suck...I am sorry.  Sometimes it is like rolling dice, hope you roll better next time.



Posted: Wednesday, November 16, 2016 1:23 PM
Joined: 10/9/2014
Posts: 1187


Man, your ordeal sounds incredibly trying.  It's unbelievable that you and your husband have endured so much and still aren't really sure of the diagnosis. There are some great responses above.  I have found that a teaching hospital offers a lot in the way of the most current tests and treatments. They also seem more focused on solving perplexing and hard to treat cases.  

I assume that the doctors have looked at everything, but, I was just curious as to whether they considered Huntington's Disease.  Does he have any muscle issues?

In your post you say that he had EPISODES.  What did they entail?  Did he complain of physical symptoms?  Panic, fear, paranoia, and is there memory loss? What about his blood pressure, heart rate, etc.?  What is the state of his physical health, outside the mental distress?