Referral for possible dementia
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I've been dealing with 11 new neurological symptoms over the past year. My Doctor performed a memory test on me today which I scored a below average. He prescribed memory loss medication and put a referral in for a Neurologist who specializes in dementia. Can anyone tell me What I need to expect next?
1 like, 4 replies
derek76 Jon8181
Posted
Jon8181 derek76
Posted
I'm 64 years old yes I've had many MRI brain scans because I've had multiple Lacunar strokes and Ischemic Thrombosis Strokes. The last MRI brain scan was last year and that's when they found I had changes to my CSVD (cerebral small vessel disease). I've also been diagnosed with Complex Partial Seizure Disorders and Simple Partial Seizure Disorder, Cerebrovascular Disease. I've been dealing with 11 new neurological symptoms that I've tried really hard keeping from my wife and family but during the July 4 week we spent a few days with our youngest son and he pulled me aside and told me that when we would talk I would constantly repeat myself, he asked me what was going on and I said nothing just a little stressed but then he talked with my wife, his mother, and told her and she said oh yeah dad's been doing that for a longtime. Well I knew I had to come clean so I sat them down and told them about all the symptoms I've been having that they're getting worse and happening more often. The two main ones are my short term memory loss and communication I also deal with mood swings, depression, apathy, confusion, judgement, I stopped watching tv and reading because I can't follow the storyline, roaming, sleep disorders, my vision. We live with our oldest son and his family. My daughter in law said when we first moved in 3 years ago she noticed I would repeat words and sometimes pause when I talked like my brain was looking for the words. That's how it started with my communication. At first the words in my head I knew what to say but when they came out of my mouth they weren't the same words and sometimes they were offended family members so I quit talking. Then it got to where I couldn't find the words in my head anymore. It was like someone went inside my head and took away half of the alphabet and half the words I used to know. I would sometimes wouldn't remember faces. Things would happen inside my head I told my doctor yesterday that I can't explain to my family what's going on inside my head, why I will be fine one minute but my wife may say something and I will go ballistic. I call it my mental spider's web. Like being caught in a spiders web at first everything is fine and then slowly the spider wraps you up around and around and around and pulls you down his dark tunnel and you have to start all over again. So I just quit talking, I don't go anywhere I don't want to go anywhere. So that's where I'm at. These symptoms don't happen all the time but some happen more then others.
derek76 Jon8181
Posted
You write very coherently and understand your problems very well. It made me look up CSVD
and I've sent a link to you that I can't post here but it is all things that you probably know.
I hope the medications help.
Jon8181 derek76
Posted
Thank you for the compliment but I have to admit that all I write about my symptoms I copy, everything is already written down. I don't pretty good starting out but somewhere I will caught up in my mental spider's web. It's a lot easier for me on a site like this because when you type in a couple letters the word you are looking for automatically pops up so I can't take all the credit I really wish I could. CSVD is short for Cerebral Small Vessel Disease. The doctors don't really good looking for it, what happens is you have to have certain neurological things happen like a Ischemic Lacunar Stroke and other neurological issues. When they do a brain scan and you've had one of those issues like I did, the Ischemic Lacunar Stroke, that's when they are able to see /find it but you have to have had one of these certain neurological issues for them to see it, they can't just do a brain scan and find it. Also the software they are using in there MRI when they are performing the MRI brain scan has to be a certain type of software. The reason they were able to find/see it when they did the MRI brain scan on me, I had originally gone in because I had been having multiple seizures like 4 - 6 per day but at the time my wife and I didn't know I was having seizures we didn't know what was going on. So I read somewhere that a mother tried explaining to her son's doctor what he was going through but he wasn't understanding so she took a video of him on her phone. I told my wife to do the same thing. So she was able to video my episode on her phone and when we saw the Neurologist at the ER in the hospital he immediately said he's having a seizure. We were so relieved we both broke down and cried because at least we knew what was happening. They admitted me, performed an EGG, MRI brain scans, CT brain scans they did all sorts of scans. The problem is this. That was done February 2017. In March 2017 we saw the top Neurologist who viewed all my scans because I also was dealing with dizziness, balance issues, falling down and headaches every day 24/7 but he couldn't give me a reason why. I also was having my memory loss issues about 8 months before I saw him and that's when He told me due to all the strokes I've had is the reason why I have short term memory loss but he never explained to me or my wife what short term memory loss was. So after I recently told my wife about all these new symptoms I have been dealing with her and I got out all my old paperwork from that neurologist and what we found shocked us and angered us. We began reading through it and the first thing we found was the CSVD. Well I didn't even know I had CSVD let alone any changes to it. So that's when we started to research it and found that people who are diagnosed with CSVD or Cerebral Small Vessel Disease are 3 times more likely to have a stroke and 2 times more likely to be diagnosed with dementia. If they knew about that then and we find out that this turns out in diagnosed with dementia my wife said we are going to sue Loma Linda University Medical Health because they were aware that bear minimum I was 2 times more likely to be a good candidate for dementia, why not start giving me medications to help me not get dementia or do something but no they chose to do nothing. If they would have taken the time they would have found out by my family statements a lot of my symptoms I've been experiencing were already showing up during that time and even before that like short term memory loss, communication, confusion, can't follow a story line, roaming, mood swings and depression were all going on during that time, not like it is now, I wrote it down when I myself began to notice these symptoms but my family noticed the majority of my symptoms 2 to 3 years ago. It get better. Remember me saying that I deal with dizziness, balance issues and falling down and headaches 24/7 everyday but that neurologist could not tell me why? As we read on through his report we got to the part were heading talks about my Gait. We didn't know what my Gait was. He diagnosed me with having this
Mr Ciotti's Gait: Wide-Based Ataxia. We looked that up and it says a person who has this their walk is similar to a person who has Cerebellar disease. So we looked up Cerebellar disease and the symptoms of that disease, are you ready? Dizziness, balance issues and falling down and headaches. I'm not lying or embellishing at all look it up yourself and please write me back and tell me what you think.