Misdiagnosis: Life Changing Storm

ALS misdiagnosis
The worst news.
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I had been referred to neurology to have some unusual left-sided muscle twitches checked out that had been going on for a month or so since returning from a vacation in Kauai.  I soon was to learn what I was experiencing were fasciculations; in medical terminology this describes the process of nerves detaching from muscle groups causing them to involuntarily twitch.

I had blamed these worrisome symptoms on my super jock husband who had dragged me over miles of hot sandy beaches and some death defying hikes along the cliffs of the Na Pali Coast.  But it seemed that this was something he didn’t have to take the rap for.

After an examination by a young neurologist, he informed me that he was pretty sure my symptoms might indicate Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig’s Disease. I glanced around the examining room as though seeing it for the first time and wondered what rabbit hole I had fallen through.  I then looked at him in disbelief and said, “That’s a death sentence.” To which he casually replied, “We all are going to die sometime.”  I whispered, “I realize that.  But I didn’t think I would die this soon and in this way.”

It had been only a year and a half since I had gone through chemotherapy and radiation for Non-Hodgkin’s Lymphoma.  I had survived all that only to be told that now I might have something even more terrifying.  For the last several months I had been joyfully styling my new short curly hair and was feeling good about my appearance and restored good health.

The doctor added that to make a definite diagnosis of ALS, some definitive tests had to be done to rule out other possibilities.  He would order a brain scan, EMG (electromyography), Upper GI, and blood tests.  I found it difficult to pay attention.

I found my car and robotically started the car and drove home.  I managed to angle my little white car into the crowded garage and then walked down to my husband Jack’s office.  As usual he was hunched over his computer in one of his sacred University of Wisconsin sweatshirts firing off messages to his two brothers concerning their family business.  I stood in the middle of the room and a feeling of safety wrapped around me as I scanned his shelves of familiar Wisconsin memorabilia.   I sat in the chair by his spinner bike and said, “I think maybe you might want to turn around and give me your undivided attention because I have something to tell you.”

He swung around.  “What’s up?”

“I want a dog.”

Jack looked exasperated. “But as I have told you, I don’t want a dog.  And why are we having this discussion again?  I’ve had dogs before (prior to me) and I’m always the one who has to take care of them.  Dogs need exercise and so therefore they need to be walked.  Even in the rain, even when it’s very cold and the wind is blowing.” “If I know you, and I think I do, you will only walk that dog when the sun is out, when it’s warm and there’s no wind.”

There was more.  “Then, there is the problem of leaving your trusting little pooch in a kennel when we go on a trip.  Or, how’s this?  If we are away for a long day or evening, dogs have a hard time understanding why there is no kibble in their bowls.”

I listened a bit longer to more of his justifications (some very valid I have to say) and then told him about the results of the exam with the Neurologist.

Jack picked up a pen, rolled it around with his fingers for a long moment and staring out of the window, said, “This cannot be happening to us again.”  It’s packed into his German genetic code not to show his emotions, but when he did look over at me I knew he was losing the battle.  “Of course we’ll get a dog,” he said.

The most comforting thought that helped me through the next few weeks of testing was that I had been promised a dog.  I realized I had put Jack in an impossible situation, but what the heck, cut a dying gal a little slack here.  I guess   there are no lengths to which I won’t go in order to get what I want.

I picked a Cavalier King Charles male puppy from a picture that was sent to me over the internet by the breeder.  At that time he was only four weeks old and I was promised I could pick him up at eight weeks.  Holding this puppy was such a lovely and joyful thing to visualize when times were tough indeed.

So far nothing was showing positive for any other condition.  I was so hoping the result of each test would show anything other than ALS, that when I went for the brain scan I was willing it to see: MS, a tumor, an aneurysm or even the hole I sometimes thought was there.  But after all the tests had been completed, I was told the results confirmed the diagnosis of ALS.  Even though I knew it, I didn’t want to hear it.

My daughter Vicki, who was devastated with this yet again bad news, was scrambling around looking for anything that might seem to be promising in reversing this disease.  In her search for information of some value happening on the medical scene, she found a man in So. Cal., who described himself as a homeopathic doctor. His brilliant idea for curing ALS (one that I’m sure he hasn’t shared with medical science) was a concoction of herbs; one could only guess, from where or from what.

After a “consultation” with me on the phone ($150.00 per hour with subsequent check-in calls) I received in the mail a jar of the most foul tasting, smelly black brew imaginable. The bill: $600.00.  Hope does run amuck when people are desperate.

The irony of this particular part of the story is that I am a retired R.N. and should have known better. My husband, an engineer, did know better.  But he held his reservations to himself and supported any idea or plan that Vicki came up with.  My distraught daughter, a lawyer, was no dummy either, but she was convinced that we had to keep trying anything that had a possibility of working. 

After three weeks of nausea from choking down the dreadful brew, I poured it down the drain.  While that made me feel better I’m not sure the local sewage agency appreciated it.

During this time I was having acupuncture treatments three times a week with a reputable well known practitioner.  Another Vicki find.  But not once did he give me false assurance that his procedures would eliminate the underlying problem; his offering was to relieve the symptoms and to boost my immune system.  I looked forward to these treatments for it diminished my feeling of helplessness. This was something I could do.

While we were struggling with our changing world here in Marin County,  my other daughter, Debbi, who lives in So. California, quit her job as a cardiac nurse in order to allow her the freedom to come and help us.  She would drive up and spend several days at a time taking me to acupuncture or just being with me.  She talked for hours about how meaningful my life had been and the legacy that I would leave to our family through my paintings.  When she would get into her car to leave I felt a part of me climbing in there with her.  The impact of my diagnosis had created a circle that was widening quickly and changing other lives as well.

It was the job of my Internist to orchestrate how my care was to be managed.  One of the first things she felt strongly about was to have Jack and me meet weekly with a psychologist whose specialty was counseling patients with terminal diseases.  Now there’s a happy career choice.  I called her the “death and dying lady”, which I know was a bit disrespectful, but it certainly defined her role for me. 

Yet she was a lovely and compassionate person and it was comforting to have someone help us with the planning and preparation for the ordeal we were facing.  We discussed many things during our time together.  Should we install an elevator for a house with way too many stairs?  How crazy should we get pursuing the latest weird “cure”?  How do we go about contacting the Hemlock Society when the time seemed appropriate…and other cheerful topics. 

The weeks of waiting were finally over.  It was time to get our puppy.  There had been some lively discussion about his name; my husband being from Wisconsin wanted to name him after his Alma mater, the University’s mascot, ‘Bucky the Badger’.  Yikes! This dog is ROYALTY!  How can he be named after a corny looking phony badger for Pete’s sake?

And so, another dog dilemma.  First, he didn’t even want the dog and now his name is a big deal. The solution for this major problem (so nice to be focusing on a happy one) came one day when I was reading the paper and there was an article about the Buckingham Palace.  Aha!  If we named him Little Lord Buckingham, (I know, a bit pretentious,) that would appease me knowing that he had a proper name and then it would be o.k. to call him Bucky.  I guess in my own fashion I’m still learning about compromise in this life of mine.

Bucky brought us not only the gifts of his adorable furry little self, but some amazing luck.  A second opinion had been arranged for me by a good friend and colleague at the facility that had employed me for nineteen years. She was appalled I had not been advised to do this. Her view was: when confronted with a serious medical diagnosis, get two, three, or even four opinions. My appointment was with a neurologist who was the head of his department with impeccable credentials.  We had been so trusting of the results of the tests and the final diagnosis, getting someone else to weigh in didn’t occur to any of us.

My husband and my daughter Vicki went with me, carrying their folders full of the information they had gathered for the longest six weeks of our lives.  After his thorough exam and another EMG, the doctor told us that most of the presenting symptoms were not detected.  The most beautiful words I ever had heard anyone say, were these:  in his opinion, the symptoms that he had found were not compelling enough for a diagnosis of ALS.

When he left the room with instructions to see him in three months for a recheck, the three of us were crying and hugging each other; folders put aside and me in a circle with these two dear ones, my exam gown flying open in the back.  As Vicki picked up her belongings she said, “Well, Mom, you got your dog.”  Then she asked Jack if he ever would have paid $1,800.00 for a dog.

I’m sure he could have been heard in the waiting room when he replied, “Hell, no!”

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