Bing Neel syndrome occurs when Waldenstrom cells enter the brain, the fluid around the brain, or the spinal cord. It is currently not known why some WM patients get BNS and others do not, and we currently do not know of any ways to prevent it from occurring.
Symptoms of Bing Neel syndrome
Symptoms of Bing Neel syndrome can be highly variable, but can include: headaches, neuropathy, vision problems, seizures, difficulties with walking / balance, loss of feeling / movement affecting the arms or legs, and new memory problems.
Some patients develop BNS at the same time as their WM. Others develop BNS while their WM is still in remission after treatment. For other patients, their BNS symptoms occur before they have experienced any symptoms (or even a diagnosis) of WM.
How is Bing Neel syndrome diagnosed?
Patients who present with symptoms suspicious of BNS will be advised to undergo a number of investigations that are important for confirming the diagnosis and assessing its severity. These investigations include imaging (including an MRI scan), blood tests, a bone marrow biopsy and a lumbar puncture (LP) to sample the fluid that surrounds the brain and spine.
Patients with Bing Neel syndrome should be referred to a specialist centre wherever possible. It is helpful to have input from haematologists and neurologists who are familiar with this condition and treat it regularly.
How is Bing Neel syndrome treated?
Bing Neel syndrome is treatable, and most patients experience good improvement in their symptoms with treatment. Many patients experience good remissions from their BNS.
Treatment for BNS is tailored to the individual patient and their symptoms, and is often similar to the treatments used for WM.