My Neuropathy is caused by Cancer
My story - 62 year old M:
In the summer of 2025 I felt some tingling and numbness in my right toe. Overtime, the numbness extended into my right foot and I went to my family doctor in early October. By the end of Oct I had seen a neurologist and had a nerve conduction test and emg and many blood tests. The tests showed very minor early issues and i was diagnosed with idiopathic neuropathy and told I would experience slow progression over many years.
By December the buzzing, tingling and numbness extended into my groin and buttocks. MRI of brain and spine came back clean. In January after more blood tests, my neurologist was set on small fibre neuropathy given the clean MRI. During Feb I started to lose strength in my legs, exercise and stairs became more difficult, walking more difficult and then in March I bought a cane, could barely do stairs or walk, and experienced urinary problems etc. Faced with these changes, my neurologist advised me to go to the hospital emergency immediately.
I was admitted to the neurology unit and had multiple MRI, CT scans etc. The doctors suspected chronic inflammatory demyelinating polyneuropathy. A lumbar puncture came back indicating cancer cells. After more tests including a PET I was diagnosed with diffuse large B cell Leptomeningeal central nervous system lymphoma. A highly aggressive cancer with a very high mortality rate if left untreated. I would have died within months without the hospital visit. This is a liquid tumour sitting at the base of my spine, destroying the nerves L1 through S5, basically waist down. This is a very rare cancer, less than one in 1.5 million occurrence.
Before starting chemo I had foot drop in both feet, profound buzzing, numbness, heavy legs, loss of balance, unable to control my toes, and worried I would be in a wheelchair.
I started chemo March 25th and am now completing my 2nd round of chemo. I am scheduled for fours rounds of MATRIX protocol chemo followed by a stem cell transplant.
Very encouraging - my neuropathy appears to be receding. My toes can wiggle again, my foot drop is improving, the “roll of coins” feeling in my feet is gone, I can walk a few steps without a cane and can walk further with the cane. have less symptoms in my groin.
Lymphoma was the absolute last thing anyone suspected. My neurologist said it wasn’t even on his radar and it is a learning experience for him (I respect him for saying this.) The highly specialized hematology cancer unit in a major hospital said this is so rare they get only one case every few years and another very experienced hematologist said she had encountered it less than 10 times in her career.
I don’t know if I will survive, this is a very aggressive cancer. I don’t know what my future holds for mobility, neuropathy etc. I take it one day at a time and am very thankful for the support of my family, friends and medical team. My medical care has been exceptional. I am so thankful to be in Ottawa Canada and have received world class medical care at zero cost.
My story hasn’t ended, there will be more to tell, but if anyone experiences similar symptoms, consider the possibility of lymphoma.