Diagnosis day at the neurologist’s office

July 22, 2005

The day started like most other summer days, but this day was somehow different. I could FEEL it! I was not looking forward to going to the neurologist’s office in the afternoon. This was the day that I was going to find out the results of all the tests that I had done. After my first visit to the neurologist, just six weeks ago, he said that he couldn’t rule out anything yet. He told me that he was trying to especially rule out very early onset Alzheimer’s.

My husband and I had become strangers, but I still felt the need to have him with me to hear the results. Did I somehow know that the news was not going to be good? After all, I’d been having strange symptoms for a while. I might have shared it with my husband if we had been getting along, but then again, I’m not so sure. I think that I was afraid to share this with him because I was afraid of him making me feel stupid! I guess I’ve probably been having symptoms for about six months. Well, that is what I said when I journaled but when I think about it, I can trace my symptoms back to the fall of 1999.

I somehow felt protected with him there. I guess that I wanted my husband there so that he could understand what I’d been going through lately. I had been constantly forgetting things and my husband and children would get angry at me. This I remember. It was a constant struggle to remember things, which made it very frustrating for me. I was even forgetting how to spell some words and I found myself using a dictionary at work.

When my husband and I first entered the examining room, we sat down and we waited a few minutes for the doctor to come in. When he entered the room, I introduced him to my husband. The doctor then asked me how I was feeling and if there were any changes in my symptoms. I told him that I felt the same as before. I guess I was nervous because I jokingly told the doctor, “I hope that I passed all my tests!” He looked too serious and I was afraid of what I was going to hear. The doctor said that he’d go over the test results with me. He then did a few quick tests with me. I guess they were mini mental tests. He asked me to demonstrate these things: I had to pretend that I had these items in my hand, to use a comb and comb my hair, hold a nail in one hand and a hammer in the other, bang the nail with the hammer. I also had to draw the numbers on a circle to make a clock. Then he had me draw the hands to show the time ten-fifty. I think that he also had me start with the number one-hundred, count backwards and subtract seven. Math has never been my strong thing, so that was difficult for me. And it probably would have been without a memory impairment. So, I somehow felt a little confused while I was doing these things and I wasn’t sure why. Afterward he told me that I had done all of the tests well, but on my first appointment with him, I had failed most of them. He also had a physician’s assistant in the room and he asked me if it was okay if he stayed and I said, “yes.”

On this day, my worst fears were confirmed! He put the images from my pet scan on the light box. He proceeded to tell us that what we were looking for were parts of the brain that use sugar. Then he explained and showed where the sugar on the pet scan should have been and where it wasn’t. He said that there was some damage to parts of my brain. He said that the only diagnosis that he could give me was Early Onset Alzheimer’s Disease (EOAD). He told me that my pet scan resembled an Alzheimer’s patient.

Although I tried to prepare myself for the worse possible diagnosis, I was still very devastated by these words! Now I was secretly afraid that my future was in question and I worried that I wouldn’t be able to enjoy my future grandchildren. At the time of my diagnosis, my children were twenty-three, nineteen and fifteen years old. I was also afraid for my children that they would also be diagnosed with Alzheimer’s disease when they are much older. I felt as though it was a death sentence!

I felt like I had gotten hit with a brick! I was in shock to hear it, but there were the words! They had been said! I was speechless! I was motionless! But my husband, who was always the skeptic had some questions right away. He said that he needed to be honest with him and that we were having marriage troubles. My husband suggested that maybe it was depression or attention span that was causing my memory problems. My doctor said that he didn’t feel that it was either of those things. He said that he had a hard time making this diagnosis because of my age. He said that because I was only forty-seven years old, that I should get a second opinion from another neurologist. He did strongly encourage me to seek a second opinion in Boston, MA. He wrote down Mass. General Hospital and what type of doctor that I needed to see, which was another neurologist. He said that he hoped that he was wrong. Then he said that he wanted to see me in two to three months He gave me a script for Aricept to help with my memory. He told me that it should slow the progression.

Thankfully, after this appointment, my husband and I had some errands to run. Otherwise, I probably would have fallen apart! I didn’t know if I was ready for the journey that I was just told that I was on!

I think that before my diagnosis, I had dismissed any of my symptoms, thinking that they could be caused by other things such as menopause, depression or stress.

I felt like I needed to believe this first diagnosis unless I hear otherwise from another doctor. I was afraid of being hopeful and then being devastated all over again! I’m feeling like I’ve somehow let my family down. Although I know that it wasn’t my fault.

I still needed some time alone, so I watched television for a while. Later I used my computer to research Alzheimer’s disease. That turned out to be a very bad mistake! Then, I realized when I was reading the information and symptoms on the screen, that I probably wasn’t going to get a different diagnosis. It was extremely difficult to clear my head so that I could get some sleep, so I watched television until 12:30 am.

I had an extremely difficult night. I kept thinking about the doctor’s appointment and the diagnosis, crying uncontrollably, trying desperately to get some sleep! I think that I only slept about one to two hours all night. I regretted doing the research on my computer.

I need to try to stay positive and strong for my kids. When I was researching Alzheimer’s, I read that most patients died within eight years of being diagnosed, but that some die within three years and some lived up to twenty. If I definitely have this terrible debilitating disease, I hoped and prayed that it would progress very slowly. I hoped that I would live to see all of my children become happy, successful adults. I worried about NEVER seeing my future grandchildren and that upset me terribly!

UPDATE:

I had to stop taking Aricept because I had severe leg cramps. A couple of weeks after this appointment, I had an appointment to see my allergist. I told him about this appointment and he told me that I should see his roommate from medical school. He told me that he worked in Boston and he gave me his name and phone number. I was able to get an appointment but it isn’t until early November. It was very difficult to wait almost three months for this second opinion.