Peripheral neuropathy can be caused by any number of conditions – not just Waldenstrom’s macroglobulinaemia – or even some treatments.
The peripheral nervous system carries messages to and from your brain to various parts of your body – things like sensations (e.g. touch), muscle movement and organ function (e.g. your bladder telling you it is full).
With Waldenstrom’s macroglobulinaemia, your body produces too many abnormal white blood cells, which in turn produce too much of a protein called IgM. In some people, the abnormal IgM targets nerves in the peripheral nervous system, damaging it.
The damage causes them to send too many or two few signals to other parts of your body – like a damaged electrical wire short-circuiting – which causes the symptoms people with PN describe.
Around half of people living with WM experience PN. It’s important to tell your healthcare team as soon as you can about any symptoms of PN, to prevent any further nerve damage.
Your doctor may also refer to PN as anti-MAG neuropathy. Myelin-associated glycoprotein (MAG) covers your nerve endings (like insulation on an electrical wire) and it is this that is damaged by IgM.
What are the symptoms?
Tingling or ‘pins and needles’ in your feet or hands
Tremors
Numbness in your feet or hands
Problems with walking, balance or co-ordination
Muscle weakness
Pain in your feet or hands, this may feel like a burning pain, or stabbing, shooting pains
How is it diagnosed?
If you have PN symptoms, it’s recommended that your doctor refers you to a neurologist, who has the specialist knowledge to diagnose and treat you.
Your specialist will assess you, taking into account things like your symptoms, how fast your symptoms have developed and changed, and any treatment you’ve had. They’ll check your power, balance, co-ordination, reflexes and sense of touch.
They may also carry out tests called a nerve conduction study and an electromyography (EMG). These tests both use electric pulses to check how well your nerves and muscles are working. The nerve conduction test measures how fast your nerves send messages to your brain, whilst the EMG records the electrical activity in your muscles. Neither test is painful, although some people report discomfort.
On top of these tests, your neurologist will also take blood samples and, depending on the results of your other tests, in some circumstances they may ask for a biopsy.
These tests will help your neurologist not only diagnose you, but help rule out other underlying conditions that might have caused the PN, like diabetes.
How can it be treated?
Because there are so many different causes of PN, treatment varies from patient to patient. From the results of your tests, your healthcare team will be able to advise you on treatment.
Your doctors will assess your symptoms and history and discuss whether it is time for you to go on treatment – this is usually down to the severity of your symptoms and blood test results. If, for example, your PN and WM are not getting worse, then you might feel that it’s best to hold off on treatment and continue to be on active monitoring.
Treatment focusses on the root cause of the PN, which in this case means treating your WM. You can find out more about treatment for WM. Although the goal is to ensure your symptoms don’t get worse, many WMers find their symptoms improve after treatment.
If you are in pain with your PN, speak to your neurologist who may be able to prescribe some painkillers to help. There are lots of different options when it comes to painkillers, depending on where you are experiencing the pain and any other symptoms you might have.
Sometimes, the damage to your nerves cannot be fixed by treatment. If you have on-going problems with movement and balance, speak to your healthcare team who can refer you to a physiotherapist with expertise in helping people with conditions like PN. They’ll be able to give you exercises to strengthen muscles and help you adapt.
