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8 Final Mayo Clinic Diagnosis

A short time latter, 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. In order 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 that 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 was just as well because it was such a long shot anyway and that I would be stuck dealing with two different doctor 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 that was suppose to extend your life 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 loose physical capabilities you cannot 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 look it 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 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 to not put off such adventures.


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1 introduction 2 ALS - the disease 3 early signs of trouble 4 the terrible news 5 moving on 6 Barbara’s horse...

2 ALS -The Disease

Amyotrophic lateral sclerosis (ALS) is a neurological disease that destroys the nerve cells that control voluntary muscle movement. These...

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