August 2021 • 2 min read
8 Final Mayo Clinic Diagnosis
A short time later, I was back at the Mayo Clinic for more testing and a final diagnosis. My neurologist was trying to find an explanation for my symptoms other than his preliminary ALS diagnosis the month before. To rule out other neurological, immunological or inflammatory diseases, I had a spinal tap, x-rays, an MRI, CT scan and comprehensive blood work.
I said a little prayer between each test. I don’t know if other patients in the Mayo waiting rooms were as calm as they appeared, but I was a nervous wreck. My heart sank as one by one the tests proved negative, and my hope for a different diagnosis faded. The CT scan showed a bad parathyroid gland. My neurologist showed me a research study that noted a connection between this and ALS; however, the consulting Mayo Clinic endocrinologist disagreed and said there was no connection.
My neurologist said if I wanted, I could get another endocrinologist’s opinion. I asked him to let me know if he found a good person for a second opinion, but I did not want a doctor who was willing to do surgery because I was desperate to try anything. I never heard back from my neurologist. I decided that it was just as well because it was such a long shot anyway, and I would be stuck dealing with two different doctors’ opinions.
The cause of ALS is still unknown, and currently, there is no treatment that halts or reverses its progression. My doctor asked me if I was interested in taking Riluzole, which was supposed to extend your life by about three months. I said no when he couldn’t tell me whether the three months were up front or at the end, when I would likely be ready to go. Possible side effects were also a concern to me.
We discussed why my legs had initially given out at the airports and now I could walk close to normal. I said that I had read that with ALS, once you lose physical capabilities, you cannot normally get them back no matter what you do. He said he had no answer as to why I had regained the use of my legs and that it was important for me to learn the appropriate amount of physical exertion. He said a good rule of thumb was how I felt the next day.
My doctor said that he was sorry he could not offer more help. He suggested that I get my affairs in order, and his RN gave me a copy of “Five Wishes” to provide guidance regarding my final wishes. The Scottsdale Mayo Clinic had a good patient library, so I loaded up with information on ALS and looked at it at home to add to my internet search material.to provide guidance regarding my final wishes. The Scottsdale Mayo Clinic had a good patient library, so I loaded up with information on ALS and looked at it at home to add to my internet search material.
Before my first Mayo Clinic visit, Betty and I had scheduled a much-anticipated trip to Anchorage, Alaska, for the start of that year’s 1,000-mile Iditarod sled dog race. Sled dog racing is my favorite spectator sport. Since all the additional testing didn’t change my ALS diagnosis, we lamented the fact that I had not told my doctor that the follow-up testing would have to wait until after our Alaska trip. This was an early lesson not to put off such adventures.
