A new ‘voyage’ began on Nov. 16

If you read my columns you know that I have had a heck of a bad summer – itches, swelling, fatigue, lack of strength, shortness of breath, etc. – a royal mess! I have tried to be my own diagnostician for what I suspected to be systemic lupus. It appears that I may be wrong. As a 10 per center, I do not like to be told what to do. So, having my personal my care doctor (PCD) tell me what to do didn’t sit well with me. It took me five months to get an appointment with her and when she did she laid down the law to me – do what I say – and she made my wife my enforcer.  She did this on Oct. 18.

Three weeks later, on Nov. 11, I had a referral to a rheumatologist at the Arva Clinic, in the small town of Arva, just north of London. A Remembrance Day that I will never forget. London is an hours’ drive from where I live in Seaforth. So, my wife and I decided to make a day of it and go Christmas shopping at London’s Costco. We did very well and met our rheumatologist at our appointment time of 4 p.m., nice and relaxed. Little did we know the new “voyage” that we had started.

Entering the Arva Clinic we were surprised that there were no other patients in the waiting room – it was quite large. There, I met my rheumatologist, Dr. Carla Hewson. They were all business; the triage asked many questions and then the doctor came in to assess me. She wasted no time. I told her about my theory regarding systemic lupus but she didn’t pay attention to me. Very perplexing! I had done all this homework on my symptoms and thought that I knew my illness. Little did I know.

For 45 minutes she went over my triage questions and inspected my skin and my muscles. All along she was making notes in her computer. Finally, she said to me that she thought that I had dermatomyositis (DM) – a disease that causes inflammation in the muscles. This is a chronic disease that leads to muscle weakness. I was not ready for this diagnosis! Apparently, something triggers the immune system to go awry. It begins to attack the muscles, leading to weakness, shortness of breath, swelling tongue, mouth and all the other problems I was having this summer as described in previous columns.

Anyways, she finished her assessment and declared that she was 95 per cent confident that it was dermatomyositis. She then set out a seven-point plan that would have me doing and taking tests over the next five weeks. Then we would meet to confirm the diagnosis and set up the medications to beat this DM. The date was Dec. 21 – just before Christmas.

The plan:

  1. Blood work for autoimmune markers, muscle enzyme.
  2. EMG test for muscles.
  3. Breathing tests – pulmonary function tests.
  4. Echo – ultrasound of the heart.
  5. CT Chest – abdomen and pelvis.
  6. Prednisone – 50 mg per day and stay on that dose.
  7. Swallowing assessment on Dec. 21.

I was feeling better with a written plan in place. So we headed home, quite happy.

On the Monday, Nov. 15, I told my wife that swallowing was getting much worse. She phoned and left a message for Dr. Hewson in the afternoon. The next day, at noon, Dr. Hewson phoned back (imagine that) and told us to pack up and they had arranged for me to be admitted to London Health Sciences Centre through the Emergency Department. I spent the next 15 hours in triage before being admitted at 5 a.m. on Nov. 16. This was a bit of an ordeal.

So here I am, writing my column as usual on the Sunday night before publication date. The big difference this week is that I have a ‘no swallow – no drink or food order.’ My water and nutrition and medications are added to my stomach through a line to another line leading into my stomach. Not terrific! So “My Voyage with Dementia” continues with a voyage I call ‘autoimmune.’

And life goes on – stay tuned.


Bob Murray is retired from the graphic communication (printing) industry and has been living in Seaforth since 2015. Murray was diagnosed with Dementia in 2013 and works hard to stop the progress of the disease to AD. He shares his experiences in his column entitled “My Voyage with Dementia.” Follow him on his blog entitled Voyage with Dementia – https://myvoyage553264702.wordpress.com.

Bob Murray