PNS paraneoplastic neurological syndromes

Has anyone come across PNS or paraneoplastic neurological syndromes? My husband had a seizure on Monday, has been in hospital since. Unable to move or communicate easily, can blink or give a slight squeeze of hand. Initially doctors said he was probably in end stages of his nsclc. I get the impression they expected him to continue to deteriorate. I think the deterioration has been too quick and must be related to something else. His symptoms seem similar to PNS. Any experience of this out there?

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  • So sorry to read this, when my husband started having seizures he went to a similar state, but the seizures where due to the spread to the brain. I was grateful of the time I had with him, those last few days. Knowing he wasn't in pain and myself and our kids where able to sit with him, cuddle him and tell him how much we love him..

  • Hello Kates_cat,

    So sorry to hear of your husbands deterioration, this could be caused by the tumour spreading into the brain or by a stroke, unfortunately both these conditions can cause seizures and can develop rapidly. He should have a ct scan which will diagnosis the cause of the seizures and commenced on medication to control them. Once the seizures are controlled his conscious level may improve. I think it is probably advisable to discuss your concerns with the staff treating your husband.

    Below is some information which i hope is not to much and is of some help. You can always contact us directly on the nurse led helpline 03333237200 option 2.

    PNS is rare disorder, affecting less than 1/10,000 patients with cancer.

    Paraneoplastic neurologic syndromes (PNS) are a group of conditions that affect the nervous system (brain, spinal cord, nerves and/or muscles) in patients with cancer.

    Symptoms of PNS can develop rapidly, over the course of a few days or weeks, or they may develop slowly. Often, they seem to follow what may appear to have been a transient viral illness. In about 60% of patients with PNS, the symptoms occur before the diagnosis of cancer is made. For about 40% of patients already known to have cancer, the initial symptoms of PNS may appear to resemble other complications of cancer. In addition, some cancer treatments can also cause neurological symptoms that can be mistaken for PNS

    PNS can frequently appear to affect only a single area of the nervous system. In some cases of PNS, only one area of the nervous system is involved initially, but over time, other areas can become affected. Therefore, careful and repeated neurologic examinations are required to follow and monitor the disease process.

    In the majority of patients with PNS, the tumour is localized to one site without having metastasised (spread) to distant parts of the body. Usually, the size of the tumour at this stage is small. For this reason, it can be very difficult to find the tumour. The combination of symptoms, lab studies, and the paraneoplastic antibodies that may be found in the blood and/or spinal fluid, helps to make the diagnosis of a paraneoplastic neurologic syndrome. The specific antibodies, if detected, can help focus the search for the tumour to one or a few organs.

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