Today was more or less the end of a long, frustrating 7 month journey. I first posed my cognitive problems to my PCP 7 months ago who then referred me to a neurologist who then referred me to a neuropsychologist where I was finally tested and received results today. Unfortunately my results were extremely varied and left the neuropsychologist scratching his head. He said the results were indicative of several things but most notably Alzheimer's and Lewy Body with neither truly standing out. So we did a mini extended interview to review more of my symptoms. Afterwards he said he was willing to tell me he believed I was in the very early stages of DLB but not secure enough in that belief to commit it to paper (computer). He was very definite that it wasn't vascular dementia or depression/anxiety.
So, he is sending a report back to my neurologist, who can see all of my testing on my echart and I will see him in about a week. The report will say there is notable cognitive decline and memory issues but no clear indication of a particular disease. He believes the neurologist will start me on meds in order to gain an early advantage in hopefully slowing the progression of my decline. He says I may want to consider retesting in 12-18 months unless there is clear, steady decline.
I wish I had been clear enough to have thought of asking him about the possibility of mixed dementia but that was not the case. Needless to say, today was trying/tiring and I still am not completely recovered but tomorrow is another day. And I am one step closer to knowing what's going on.
Take care,
Randy
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Poppygail
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How long ago was your testing? What were your neuropsych's feelings, if he shared them, immediately following the tests? Do you have an expectation of the outcome of your tests?
Normally I would have gotten my results back within a week but my neuropsych was called to 2 weeks of jury duty. Therefore it took 3 long weeks to get my results. Although I knew I was having problems, the severity of my results were quite surprising to me.
I'll be thinking of you and hoping you get your results soon and they are good news.
Poppygail it was about a month ago. When I did follow up with neuro, he was frustrated diagnostic report from her wasn't there and asked me if I really went! (Grrrrr) yes sir I did. Anyway l, she was very understanding and said my nerve damage was. In the communication area of my brain and was causing my personality changes )neuro had denied this could be the cause). She said I wasn't changing because of "nerves or anger", I was changing because the nerves in my communication center weren'tenxd able to communicate the way they had before. She wanted to teach me bcoping skills and gain confidence in a new "me" rather than dwelling that the "old me was gone. But ins won't pay for me to go back. She made more sense than anyone I have talked to in 20 years!!
I'm so sorry she's putting you through this. There is really no excuse for this type of delay without some type of explanation. My neuropsychologist was so apologetic that it was going to be three weeks between testing and results appt but he was called to two weeks jury duty and there was little he could do about it.
It sounds as though she at least had some good theories about what is going on with you and had some type of plan. Has she responded when you reached out to her to see what was going on? Did your neuro reach out to her? Something's just odd.
Anyway, I hope you soon get some resolution and help for what you are going through. There is little quite so frustrating as having to wait on something that should have already been completed.
Randy, thanks for sharing this part of your journey, which as you mention is frustrating, but also typical (PCP > Neurologist > Neuropsychologist).
Treating *possible* DLB is more art than science, as there is a lot of guesswork involved. Consider yourself a full partner with your health team in determining next steps -- any meds should be evaluated for benefits and risks, both in the short and longer term.
I too recently was tested and demoralized because I discovered that I couldn't do what I used to do quickly and accurately. So I have worked to find all sorts of ways for technology to remember and remind me. I am so grateful for my email "smart phone" I am learning to cope...and I hope you will find assistance that works for you.
Yes, I am finding several ways to adapt. In a way I was lucky in being with both my parents through their Lewy Body journey in that I saw many of the coping mechanisms firsthand long before I actually needed them. I am much more infatuated with my iPad than my smartphone. But I do find that say I want to look something up, by the time I pull up a search engine, as often as not, ive forgotten what I wanted to search for. Same with a notepad in my pocket. IF I remember it's there I'll forget what I wanted to put in it by the time I get it out and find my pencil. I think it's just life playing tricks on me. That way I can keep a positive attitude and laugh about it rather than get down.
I hope you continue to find adaptations to work for you and that you have a long, SLOW process.
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