Skip to main content

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..

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

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

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

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

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

    ReplyDelete
  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!

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

      Delete

Post a Comment

Thank you, readers!

Popular posts from this blog

Three Hours City Tour At Ensenada, Mexico

A THREE HOURS CITY TOUR when we embarked in Mexico on the second morning.   My sister booked the three hours city tour in Ensenada, Mexico, a van came to pick us up from the port.  Ensenada is the border of Mexico and it reminds me of Hatyai, a border town too between Malaysia and Thailand.  We were taken to a shopping area where we must haggle for the goods.  LOL.. Yes, something common in my own country... Anyway, we did not buy anything for ourselves... just a wooden handmade truck for my grandson which cost $8usd.   Nothing much to shout about on this three hours excursion, I was so sleepy on the way back to the ship that I dozed off and only awaken when we were driven through the town.  All in all, I just wanted to step onto Mexican soil and I would give this a miss if I were to go on this Mexico cruise again.  LOL... At the open area shopping walking towards the Blowhole... This is La Bufadora Blowhole, an amazing natural marine geyser that is capable of shooting water over 60 fe

The Good, The Bad But Not Ugly

MISSING AND NOW BACK IN ACTION...  I checked back my last post and it was 8 March last month and today is 19 April, less than two months only.  So what has been happening in my life?  Lots and lots... good news, bad news, sad news... all concerning health and I guess this is our life cycle as we live day by day.   My health is also not that "fantastic" during the past few months, but mine is a small rock compared to giant boulder which my best buddy is undergoing... I guess some of you know what is happening to her from her blog posts.  I was totally devastated when this happened to her, my tears couldn't help falling and my heart goes out to her.  I am ashamed to say that instead of me giving the comfort that she needs, I am the one that have been receiving her strength in times like this.  She might be crushed physically but she is not broken in her spiritual mind and soul.  One word... "Unbreakable!"  She is a shining example..... "What can death do to m

Exploring The Sea Cruise Royal Caribbean

CRUISING ALONG.... Once we deposited our bags in our cabins, we had our buffet meal at the Hammerjack restaurant and exactly at 4pm, we heard a loud Horn signal...  ITS TIME TO SAIL ALONG THE PACIFIC OCEAN! And while the ship started to sail, we humans started to walk and explore.... to familarize ourselves inside the ship....  Elevators on each side of the ship....  Making my mark....  On another side....  We walked along to check out our food outlets... This Promenade Cafe  had became our regular joint .... We like to sit there enjoying our hot drinks and desserts... Free flow of food day and night.... Passing through the bars to the casino... The casino will open only when the ship is in international waters...  At one of the jackpot machines... I wonder if they are real?? But they are only $1 bundles... Then we went up to the highest floor.... The swimming deck.... Taken against the sun.... Nice sunset in the evening.... The Happy Trio!