Walking In My Shoes: Living WITH FALS ( Episode 2 )

Come and embark on an emotional journey for answers. In this six-part series. You will read about the struggles that many PALS face in the pursuit of a diagnosis. ( Episode 2 )

Blog Post 2: New approach

Going through so much and not getting any clear answers from my doctor, I just stopped going to him. How is this possible—to go through so much for nothing? I was very upset with my doctor at the time. Listing everything I went through and was checked for would take too long, so I dove into the internet and started researching my symptoms. What I found made my heart skip a beat. All my symptoms—new and old—lined up with ALS. I told my wife what I found about my symptoms. She couldn’t believe it and told me not to worry.

I just couldn’t believe it for myself, but deep down, I knew I had found what was wrong with me. I started to freak out without alarming my wife. It kept running through my mind—everything I was going through. I found in my research that I was seeing the wrong kind of doctor. I needed to see a neurologist to help me figure this out. So, at the beginning of 2017, we made an appointment to see one. I was hoping everything would just be fine with me and that I just had some minor health problems.

The Beginning of My Nightmare

The doctor started the same way they all do—with a bunch of tests. I was sent for a spinal tap to rule out MS. We got to the hospital where the surgeon was waiting for us. We talked about the process for extracting the spinal fluid. The doctor told me not to worry, that he had done many spinal taps and that I should be out of there in 15 minutes. Just my luck, what the doctor told me wasn’t how it played out. Almost two hours later and about 20 or so punctures, the doctor finally extracted the sample needed. He apologized multiple times for everything and stated that it was the first time this had happened.

Next came my second EMG. I couldn’t understand why my doctor was sending me for another one. She saw I was upset with the fact that I had to do this again. With a kind smile on her face, she explained that, since she hadn’t sent me for the first one, she wanted to do it over. I calmed down and scheduled an appointment for it. If you’ve never had this procedure done, it’s very unpleasant. You’re shocked with a low dose of electricity to different body parts. After this, I felt bad for the dogs with shock collars.

I asked the doctor if she had a chance to look over my first EMG. She gave me a weird look and redirected the question to the current EMG. She started the procedure and kept talking to herself. I asked her what she was talking about. All she replied was, “You're cooking.” I had no clue what she meant at the time. So, she repeated herself, “Yes, honey, you are cooking.” Something is going on with you, but your doctor will explain more about the EMG done today.

On the way home, I looked at my wife and couldn’t hide that I was worried about the EMG. My wife has always been a positive influence throughout this process. How could I look into her beautiful eyes and tell her that I felt I was right about having ALS? How can you tell the love of your life that you think you are dying? I tried to calm down, but the truth was, I felt I had ALS, and nothing but the doctor could change my mind about it. It took about a month or so before we could see the neurologist. I was having a meltdown waiting for my appointment date.

The day to find out if I was right or wrong about having ALS finally came. We arrived at the office of Dr. Beth Stein, MD. She was located in Clifton, NJ, one town over from me. This was in July of 2017 when everything changed. My wife, baby girl Sarah, and I waited for the doctor to come into the room. She walked in with a sad face she was trying to hide. She asked how we were all doing. I looked at her and said, “Doc, so I have ALS?” With a cold look, she replied, “Yes, you do.” My heart dropped to the ground as she told me to enjoy what time I had left and not to come back because there was nothing, she could do for me.

( Episode 3 Will Post Next Sunday )