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Final Diagnosis Paraneoplastic Syndrome

One of my close friends have been going in and out of hospital for the past three months and till today, she is still suffering from the top to the bottom part of her body.  She has breast cancer two years ago and underwent chemotherapy after the operation.  After that she was back to her normal self.  Then in October last year she felt numbness on her left leg and one day, she tripped herself and fell down ... ever since then, her health began to deteriorate... 

Slowly as days passed, she had severe headache, vomiting followed by blur vision, numbness of the hands and legs... her headache was so severe that she passed out each time the attack came... she was admitted to the private hospital for four to five times, doctors range from oncologist, neurologist, psychiatrist... they could not detect what was wrong with her... CT scan and MRI were also done, blood tests too... And lately, she was having hallucinations.... 

The private hospital referred her to the General Hospital here in Ipoh.... she was admitted and did some tests again... but there is still no cure in her condition.... 

And finally after these few months of checkups, GH diagnosed her as Paraneoplastic Syndrome...  I don't know why I write this post today... I really felt sorry for my friend and her family... what is the next step to do?  GH has discharged her, only painkiller is prescribed... I try googling for more information especially the treatment but I could not find any... what is the next step?  

Excerpts from https://rarediseases.org/rare-diseases/paraneoplastic-neurologic-syndromes/

Paraneoplastic neurologic syndromes can manifest themselves in different ways, such as encephalitis (inflammation of the brain), ataxia (loss of balance), neuropathy (progressive numbness/ weakness of feet and hands), myoclonus/opsoclonus (body jerks and irregular rapid eye movements), psychiatric disturbances, or myasthenia gravis (a neuromuscular disorder that causes extreme weakness of several muscle groups, including those that control breathing). It is the presence of specific paraneoplastic antibodies that often leads to the diagnosis of a paraneoplastic neurologic syndrome.

This disorder affects multiple areas of the brain, cerebellum, brainstem and spinal cord.
Patients with paraneoplastic encephalomyelitis usually develop symptoms or deficits that combine those found in both “limbic encephalitis” and “cerebellar degeneration” In addition, due to involvement of the brainstem, patients may develop double or blurry vision, slurred speech, vertigo and/or dizziness, changes in heart rhythms, tremor, and slow movements. The symptoms may initially resemble Parkinson’s disease, and can progress to loss of consciousness and coma. There can also be a malfunction of the nerves that carry information and signals to and from the brain/arms/legs.
The symptoms may include anxiety, insomnia, mood changes, bizarre behavior, delusions/hallucinations, episodes of near catatonia (absence of movement), episodes of mumbling or talking gibberish, and/or confusion. Over the course of time, fine muscle twitching can progress to more pronounced abnormal movements and postures of the arms and legs (choreoathetosis). Many patients develop abnormal movements with the face, mouth or tongue (orofacial dyskinesias). Autonomic nervous system dysfunction becomes apparent, and a high temperature (as a result of autonomic dysfunction) can occur, leading to suspect an infection.



Comments

  1. I have almost same symptoms like whole body muscle twitching, numbness, weakness, tremors, muscle pain including face and tongue and whole body.. it all started 13 months ago. 5 Neurologists, 1 orthopaedic, medical, few Chinese shin sehs can’t diagnose what’s my problem. 2 EMG and 2 MRi and extensive blood tests done but no answer... there is one neurologist even wanted to refer me to psychiatrist..

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    Replies
    1. Yes, my friend was referred to a psychiatrist too... hope you can find more information on this too...

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  2. I am very sorry to read this. I'm lost in words. Pray for miracle.

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  3. How is your friend coping with all this diagnosis? Praying for strength and courage for her and her family.

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    Replies
    1. Even doctors do not know what to do.. except to prescribe painkillers..

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  4. This is devastating, praying for your friend whoever she is

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  5. In researching this, here is something I found "Mayo Clinic doctors have extensive expertise evaluating and treating people with paraneoplastic syndromes of the nervous system. Each year, Mayo Clinic specialists care for more than 4,700 people for paraneoplastic syndromes of the nervous system." This would be the hospital in rochester,Minnesota. But of course she would have to come to the states, a very long trip. I also read that it is usually caused by cancer fighting cells turning on your body. I am so sorry, this is awful!

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    Replies
    1. Yes, indeed it is very awful cos the scans she did could not really trace where the cancer cells are...

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