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My Diagnosis 1 - Suspected Dementia

Diagnosis Roller Coaster - The prequel

I knew something was wrong for a few months, but I just couldn’t quite put my finger on it. My attitude at work had become atrocious. I went in late, and left early. I just didn’t want to do anything. I was routinely sticking post-it notes on my computer screen so I would know what I wanted to do the next day. In retrospect this was as much to remember what to do as it was to serve as a to-do list so I would actually do it. I found it difficult to complete my job duties, and would surf the web for hours at a time. I set easy goals such as, “Write at least 10 new SQL statements today” or “Answer an email.” I could only do one thing at a time. I was having some obvious memory problems, but everyone just chalked it all up to stress. I hated to answer emails, and shuddered every time the phone rang. I did not want to have contact with anyone. Of course all of this seemed natural to me at the time, but nonetheless it troubled me.

Around the end of January 2010 it all happened at once. I broke up with my girlfriend, but that is for another post. My boss was coming into town next week for my annual review. I was noticing more memory issues. I had a very strong feeling that something was very wrong. I had all the symptoms of depression except I was not depressed. I couldn’t think sometimes. I began to suspect I had Alzheimer’s or something.

When a colleague came to me to get a copy of a computer program I had written a year or so before I knew I was in big trouble. When I looked at the code I had written I couldn’t understand it. As I stared at it I knew I had a big problem. I printed it off, and sat there with a pen drawing arrows and circles and little boxes until I had it figured out. It took about 2 hours to figure it out. I clearly remembered writing it from scratch in about 20 minutes. It had been brilliant in its simplicity. Now it had become too brilliant for me. I WAS SCARED!

I researched my symptoms online, and it usually came back to some form of dementia. I called and made an appointment to see a Neurologist.

Diagnosis Roller Coaster - The Neurologist

Do I really need to see a neurologist? Is this all just my imagination? I feel just fine today. Who is this guy I picked out of the phone book? Maybe I will just call and cancel my appointment. I really don’t want to call anyone today.

So I went.

I had no idea what to expect, and I was a little nervous before the appointment. It was the usual doctors office waiting room, followed by the usual doctors office examining room. I had printed up a whole sheet of symptoms that included everything I could think of. I knew some stuff was not relevant, but it was up to the Dr. to decide because that is his job, and I was basically clueless. The nurse asked me some additional questions, and I explained why I was there. We discussed what I had on my symptoms list. My biggest concerns at the time were my lapses of memory, and my inability to think clearly. She oozed compassion, was obviously concerned, and took what I was saying very seriously. She gave me a stupid little test called a Mini-Mental State Examination. I would have gotten a 30/30 except I had a little trouble remembering all 3 of the words. I knew I should not have missed anything, but also knew I did OK. At least that is what I thought.

Finally the doctor came in. He reviewed the nurse’s notes. He reviewed my list of symptoms. He asked a few more questions. He was very serious. I realized it was not just my imagination. He ordered a bunch of blood tests, and an MRI. He also wanted me to see my regular family doctor, but at the moment I do not remember exactly why. My appointment was pretty long, but that is all I remember about it. The doctor did not hesitate to fill out my FMLA leave papers for work. The reason he put down was “Suspected Dementia”. It was a shock to see it in writing. Dementia!

Dementia! Dementia! Dementia!

Diagnosis Roller Coaster - Tests and My Family Doctor

I cannot for the life of me remember exactly why my Neurologist wanted me to see my regular doctor. Now that I am thinking about it I was supposed to get something, or needed something, from him, but I did not need to see him in person, or so I thought. As I remember it his office called me, and set an appointment to see him later that same week. This is very unusual because it normally takes about 6 weeks to get an appointment. Maybe he was just curious as to why I was seeing a neurologist.

Well, I was his last appointment before lunch. I have known him and his staff for over 20 years. His nurse asked a few questions, and we went over my handy list of symptoms again. My doctor already had a preliminary report from the neurologist. We discussed my symptoms in depth. I will have to look and see if I can find that original list. I know I emailed it to myself a few times as I added to it. He gave me a more thorough checkup than usual. I ended up getting an ECG because he heard some irregularities in my heartbeat. It was normal for the few seconds they checked it. He also ordered a full set of blood tests for my Diabetes. It had been a year since I had any done, or had been in to see him.

I remember that both he and his nurse were very concerned about my symptoms. Their concern, and how serious they were, reinforced the way my neurologist acted. Now I was sure it wasn’t just my imagination, and I really did have something wrong. It wasn’t so much being in denial as not wanting to be some kind of hypochondriac or something making mountains out of mole hills. I doubted my own observations about myself.

My doctor filled out another set of papers for FMLA leave. For a reason he put memory loss and confusion rather than naming it as dementia. He decided to write the leave for 8 weeks to give time to get the tests done and figure out what was wrong with me.

My doctor, and his nurse, worked through their lunch hour when the office is usually closed. My appointment lasted over 90 minutes.

Over the next 2 weeks I got my blood tests for the neurologist, my EEG, and an MRI. I also got another set of Diabetes related blood tests for my regular doctor. I took a picture of me all wired up for the EEG. Take heart! The Crisco goo stuff they put in your hair does wash out easily. They wash the red marks they draw all over your forehead off before you leave. The MRI was no big deal except for the X-Rays. Since I had a piece of a chisel lodged in my thigh from years before they were worried it may have moved and lodged against an artery. It was so long ago I didn’t even remember which leg it was. Well, they took X-Rays, and found it on the second try. It had actually moved about 2 inches, but they decided it was safe to have the MRI. I lived, so they must have been right.

The closed MRI itself is a very tight space. I am not claustrophobic, but I found myself feeling quite uncomfortable if I opened my eyes. Keep eyes closed! Relax! Just relax, and listen to the music if they give you headphones. The machine makes a thumping sound, but that is all. They had Sirius Satellite Radio, and I chose and oldies rock station. Near the end they hauled me out to give me a shot in the arm of some dye. It was about another 10 minutes and the test was finished.

Diagnosis Roller Coaster - My list of symptoms

I suggest always making a list of questions. When the doctors start talking it is hard to stay focused on any questions I wanted to ask. In fact, it is hard for me to stay focused on what the doctor is saying. I think I missed half of what was said to me on my first couple of appointments.

I made a list of symptoms before my first appointment. I have a friend who had a bunch of weird unrelated symptoms, and he just kept track and wrote them all down for his doctor. It allowed them to diagnose an infection in his heart caused by some dental surgery. A little open heart surgery and he is as good as new. Usually this type of infection is found at autopsy. Hence the list idea.

Next - My Diagnosis 2 - Test Results 

6 comments:

  1. Howdy tasting this blog was indeed very pleasurable , topics in this way enliven who reflect this forum:)

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  2. I've been married to my soon to be 50 year old husband for almost 19 years. (will be 19 on the 20th of March) I've been noticing changes in him for at least 3-4 years, but things have really gotten worse in the last year, even more so in the last 3-4 months. His behavior,lack of concentration, memory loss, etc. has been impacting myself and our 5 children for some time, but is also starting to really have an impact on our business - a business he built! 30 years on the 18th of this month!! We've been to a local neurologist who suspects FTD. He's referred us to a University specialist to see a Neurologist and Psycho -Neurologist. Could be months to get in he said, and from what I've been reading will probably be the way it goes. I'm up entirely too late - finished watching the Superbowl and decided to do some more reading on FTD. How happy I am to have found your site!!! It's frightening to me the similarities. We of course don't have this as a diagnosis yet. He's been through lots of testing - MRI, lumbar puncture, EEg, lots of labs, etc. Lots of things have been ruled out, so I am extremely concerned, especially the more I read (he just gave us what he thought he may have Thursday - 3 days ago). I will be revisiting your blog you can be sure! Whether this ends up being my husband's diagnosis or something else, it's truly incredible what you're doing!!! Thank you! I will continue to arm myself with as much information as I can, as we wait for the phone call for the appointment date for all the testing (that you've been through). I've been keeping a journal, the more I read, the more important I think this will become in helping them come to an accurate diagnosis.

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  3. Great blog I am a 27 year old female going through similiar problem and your story helps me to identify mine clearer.I thought it was all psycholigal but symptoms have progresses and it seems I fall into the grey scale of symptoms which is the hardest to diagnose.

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  4. My name is Deborah
    , I just joined your group today.

    My story started out almost excatly like yours.

    Thank you for posting...will look for more of your infomaiton.
    Thanks again Deborah

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  5. Best wishes being sent your way, You can get through this!

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    1. Thanks! I am doing well. Some days are better than others.
      -Lee

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