Personal Stories

Finding the source


John's Story

At 65 years old, I was an active, 6’4” recreational rugby player. I’d always enjoyed good health and lived a healthy lifestyle. Now, 8 years later, I’ve been forced to slow down a little. 

It started towards the end of my career, when I was working from home. I occasionally had to make the long drive between my home office in Peterborough and our head office in Burlington. Over these long drives, I began to notice numbness in my feet – my left foot in particular. The numbness spread from my feet slowly to my ankle and my calves. 

When the problem first arose, I brought it to my family doctor. He thought it could be something structural and referred me to a podiatrist who would later prescribe me some orthotics. I wore them for a couple of years, but they didn’t help.

After establishing that my problem wasn’t structural, my doctor referred me to a neurologist. He did some Electromyogram (EMG) tests and sent little electric shocks through my nerves to watch how they progressed. Based on these results, he determined that I had neuropathy. 

The neuropathy gradually got worse. It spread from my toes and feet up to my ankles. Eventually, the numbness spread all the way up to my knees. The numbness was accompanied by spasms of pain, which seemed more or less random. I found ways of managing it and was able to avoid taking pain-relievers. (The one exception being zopiclone – a type of tranquilizer – that would help me to sleep when I needed it.) 

When it’s cancer

Around the same time, we had done some blood work. My doctor found that I had high counts of Immunoglobulin Ms (IgM) - a protein found in the immune system. 

Because of the elevated levels of IgM, I was also referred to a hematologist. We took a bone marrow sample but didn’t find anything. From then on he did blood tests at 6-month intervals, which he believed would show any change in the bone marrow.  

About 4 years ago, my hematologist gave up his practice and I began seeing a new doctor. Initially, he carried on monitoring my blood as we had always done. However, as the neuropathy was getting worse (and spreading through my hands), he wanted to see if we could stop the progression of my neuropathy (and reduce the levels of IgM). But first, we needed to figure out what was wrong. My hematologist decided to do another bone marrow sample - this time, there was cancer.

It was last year he discovered I had a rare form of lymphoma – Waldenström's macroglobulinemia – which was causing the elevated levels of IgM. To treat the cancer, I underwent chemotherapy. I had 8 treatments, one every 3 weeks. I think I survived the chemotherapy pretty well; at first it felt like a bad flu but then the effects shifted to feeling tired and a little more drained than usual. I had my last treatment in July 2014. We’ve since moved to a less frequent ‘maintenance’ schedule of treatment. With Waldenström's they generally time out the chemotherapy carefully – as you can’t get rid of it. Treatment will send the cancer into remission for 7 or 8 years. Hopefully by then we will have a cure.

My sister, who is 9 years younger than me, also has elevated IgM levels. Her neuropathy is about the same stage as mine was at her age. They haven't tested her for Waldenström's because they wouldn't treat it at this stage, but it's reasonable to assume that she has it.  Our mother also had peripheral neuropathy in the latter years of her life, although nothing was diagnosed and she did not apparently die of anything related to this condition. My hematologist says that it's not genetic, but it does appear to run in family groups.

It will take some time for the chemotherapy to work through my body, and I won’t know for a while longer what the impact is on my IgM levels. For now, the numbness has stopped getting worse and the frequency and severity of my pain episodes have subsided. 

My day to day

My pain has been primarily confined to my toes. I had heard that leaving my feet in a bath of cold water could help, but I found that alternating them between hot and cold (5 minutes for each) was more effective. These alternating baths could help relieve pain for a couple of hours. That would be enough to help me get to sleep for the night. 

Numbness has actually been the biggest issue for me in terms of limiting my day-to-day activities. I had to give up rugby at 65 because I couldn’t feel my feet - I couldn’t run. About 4 years ago I had to give up cross country skiing because it took too much concentration to not fall over. Walking has become a bit more awkward as well; I have to be careful walking on rough or bumpy surfaces and had to watch where I was putting my feet. Normally your foot will adapt to the surface you’re walking on. Mine just don’t do that anymore. 

Finding support

When I was first diagnosed I turned to the web. The Mayo Clinic had some useful information for me to better understand what I was going through. The other resource I found was the Canadian Neuropathy Support group, based in Peterborough. 
About half of the group members have diabetic neuropathy – the other half is a bit of a mix. It was good to hear from other people and learn about their experiences. In some ways, I learned what not to do. I heard stories about what others had tried, or found over the internet, and was able to learn from them. 

I’m still involved with the support group because I feel like I can help others who are newly diagnosed. Some people are quite scared after their diagnosis; maybe they hadn’t heard of neuropathy before, or maybe their doctors don’t seem to know much about it. The support group is important because it forms a community so that those struggling realize they’re not alone.

My advice for anyone newly diagnosed with neuropathic pain?

  • Find other people who have had it. When you first get diagnosed, you wonder, ‘what’s happening to me?’ No one else can see that you have neuropathic pain. You might begin pulling away from doing things and your lifestyle changes. Being able to talk to someone who has already gone through all of this really helps. 
  • Push your doctor to refer you to a neurologist who specializes in neuropathy. My family doctor will be the first to admit that he doesn’t know very much about these neuropathy-related conditions. It helps to have someone on your healthcare team who better understands what you’re going through. 

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