Sheila -

Published: 17-Dec-2013

Neuropathy in the feet led to my diagnosis, then treatment with Fludabarine and Rituximab (FC), under medication for continuing nerve pain.

Neuropathy: In August 2002 I became aware of a strange sensation in my right foot – when standing I felt there was a ridge under my heel, but there was nothing to see.  By January 2003 both feet were affected, numb in parts to touch but painful to stand or walk far.

By this time my hands were also troubling me – the tips of the fingers were numb/tingling.  During the spring of 2003 I had tests with a rheumatologist and two neurologists, one of whom did nerve conduction tests.  The other prescribed a low dose of Amitriptyline, subsequently changed to a low dose of Neurontin (a pain blocker).  All this time the pain was becoming worse with more areas in my feet affected.

In October I was advised, and had, an operation to release a “trapped nerve” in my right foot – needless to say - no improvement!!  Together with physiotherapy I went down the “alternative” route. Homeopathy, osteopathy, reflexology, acupuncture.  By the summer of 2004 I was really down, the pain was increasing and no-one was taking me seriously, some people thinking “It’s all in her head”!  The only answer from the medical world – Peripheral

Neuropathy - live with it!  But something must be is causing it? 

By chance I was talking to a retired medical friend, mentioned my problem and he said he would have a word with a neurologist he knew.  1st December 2004 saw my ‘pain filled’ life begin to improve – an appointment with neurologist Dr. Tim Lynch, taken seriously at last, and in January ‘05 went into the Mater Private Hospital in Dublin for extensive tests.

Finally Diagnosed: Two weeks later when my haematologist, Dr. Patrick Thornton, said that they had finally diagnosed WM, that it was a rare non-Hogkins lymphoma and they wanted to give me chemotherapathy (but my hair wouldn’t fall out!)  My para-protein was comparatively low at 16gr but a bone marrow biopsy together with the appropriate blood test confirmed the diagnosis.  The neuropathy was, and remains, my only symptom.  I was so relieved that there was a reason for the pain I didn’t much care that it was cancer.

First Treatment: And so began a very steep learning curve.   They started me on Chlorambucil and Rituximab but after two monthly sessions changed the former to Fludara (Fludarabine) as the para-protein was not coming down.  I had the usual nauseous and lethargic side affects, but being basically very healthy managed to carry on with my life fairly normally.

Neuropathy remains my only symptom: After a total of seven chemo sessions my para-protein had reduced to almost nil!  So, success for the medics, BUT the nerves in my hands and feet are irretrievably dead or damaged and the resulting pain has to be ‘managed’ with the help of a combination of a medium to high dose of Neurontin and a low dose of Amitriptyline.  I have learned to live with the almost continual pain in my feet and numbness in the tips of my fingers.  There are good and bad days, with the ambient weather temperature playing an important part – the feet don’t like too cold or too hot! 

I see Dr. Thornton every six months and the para-protein levels have gone up a little but are stable, no other symptoms of WM have emerged.

When newly diagnosed I really needed to talk to someone else with WM, to compare notes. Eventually, with the help of Lymphoma Support Ireland, I went to the Stockholm Forum, met another Irish WMer, became involved in the IWMF and helped start our Irish WM Support group of which I am currently the leader.

Sheila Thomson
Irish Support Group- Please email info@wmuk.org.uk for contact details