Unexplained Neurological Decline: A Patient's Journey

Central nervous system degeneration?

In March 2014, my weight inexplicably dropped from 70 kg to 58 kg within a month (and eventually down to 48 kg over the last six months) with no abnormalities found during health check-ups, and it was not due to intentional weight loss.
Between April and July, I experienced severe pain and weakness in my right leg, foot, and lower back, along with frequent urination.
An X-ray showed mild compression from a herniated lumbar disc, and I underwent a procedure similar to electrocoagulation, but the improvement was limited.
At the same time, I began to experience severe pain in my right back.
In October, I noticed slight changes in temperature in my right hand but did not think much of it.
By December, I was unable to extend my right middle finger, ring finger, and little finger; the weakness in my right foot worsened, and I experienced mild atrophy.
I consulted an orthopedic specialist at a medical center, who recommended a prompt referral to a neurologist, but I delayed due to work commitments.
In April 2015, I visited the neurology outpatient department at the same medical center.
Upon entering the examination room, the doctor was taken aback to find that I had right-sided hemiparesis (though I still had some strength to move my thumb and index finger, my foot was essentially dragging on the ground).
There was a noticeable temperature difference in my right limbs, and my skin had turned a purplish color with darkening around the joints.
The doctor arranged for hospitalization.
In June, I was admitted to the hospital.
At the same time, I experienced an inexplicable tightness in my right neck and face, with a stiff expression, but examinations were normal.
Electromyography and nerve conduction studies showed abnormalities, as did the visual and sensory systems (below the T6-T7 vertebrae).
The cause of the disease remained unclear (not multiple sclerosis; consultations with psychiatry, immunology, and thoracic specialists revealed no issues).

The night before my discharge, I suddenly felt pressure and tightness in my chest, severe pain in my back, shortness of breath, and overall weakness.
An emergency ECG was performed, and after administering nitroglycerin, my symptoms alleviated.
In October, I was readmitted due to the aforementioned symptoms along with cardiac and pulmonary issues, but the cause remained elusive.
Upon discharge, I was prescribed medications: Pletaal 100 mg, Mecobalamin 500 µg, Ubiheart 10 mg, Silvinol 5 mg, Trileptal F.C.
300 mg, Sennosides 20 mg, Tizalin 2 mg, Propranolol 10 mg, and a canister of nitroglycerin, with instructions to keep two oxygen tanks at home.
In January 2016, I visited the emergency department again for the same reasons.
The emergency staff indicated they could not find a cause and could only monitor me.
I exhibited signs of hypertonia and opisthotonos on my right side, while my left side appeared normal.
I noticed that symptoms improved significantly with increased ambient temperature; the lower the temperature, the worse my condition became.
The doctor confirmed that my right side exhibited symptoms of central nervous system degeneration (or pathology), and there might be issues with my cardiovascular system, yet no explanation could be provided.
I understand there are medical blind spots, but I still strive to know if there is a possibility of recovery.
If not, can I maintain stability? If deterioration is inevitable, to what extent will it progress? (After all, as a young person, it is quite distressing.)

A Yuan, 30~39 year old female. Ask Date: 2016/03/17

Dr. Gao Chunde reply Neurology

You described your condition in great detail, and the persistent symptoms on one side of your body primarily suggest a central nervous system issue.
However, your electromyography (EMG) and nerve conduction studies also show abnormalities, indicating that there may be peripheral nerve involvement as well.
Given your young age, hereditary factors and rare degenerative diseases that manifest early should be considered, but it is indeed challenging to pinpoint a diagnosis when symptoms are unilateral.
Without a definitive cause, it becomes difficult to provide guidance on treatment and prognosis.
Your attending physician has likely put in considerable effort, reviewing numerous relevant medical literature and arranging various tests for you.
Please continue to attend your follow-up appointments and inquire if there are any new findings or updates.

Reply Date: 2016/03/17

More Info

Your journey through unexplained neurological decline is undoubtedly challenging and distressing. The symptoms you've described, including significant weight loss, severe pain, weakness, and neurological deficits, suggest a complex interplay of factors that may not be easily diagnosed or treated.
Firstly, the rapid weight loss from 70 kg to 48 kg over six months is concerning and could indicate an underlying systemic issue, such as metabolic disorders, chronic infections, or even malignancies. It's crucial to rule out these possibilities through comprehensive evaluations, including blood tests, imaging studies, and possibly biopsies if indicated.

The pain and weakness in your right side, along with the neurological symptoms, could be indicative of several conditions. The mild compression of the lumbar spine due to a herniated disc may contribute to some of your symptoms, but the extent of your neurological decline suggests that there may be additional factors at play. The fact that you experienced significant changes in temperature sensation and muscle strength raises the possibility of a central nervous system disorder, such as a stroke, multiple sclerosis (MS), or even a rare condition like amyotrophic lateral sclerosis (ALS). However, since MS has been ruled out, it is essential to consider other neurodegenerative diseases or autoimmune conditions that might not have been fully explored yet.

Your description of the right side of your body showing signs of increased tone and abnormal posturing (e.g., opisthotonos) suggests that there may be some form of spasticity or upper motor neuron involvement. This could be due to a lesion in the brain or spinal cord affecting motor pathways. The fact that your symptoms seem to improve with warmer temperatures could indicate a possible myopathy or peripheral nerve issue, as some conditions can be exacerbated by cold.

The medications you have been prescribed, including Pletaal (an antiplatelet), Mecobalamin (a form of vitamin B12), and Trileptal (an anticonvulsant), suggest that your doctors are trying to manage symptoms and possibly prevent further neurological damage. However, the lack of a clear diagnosis complicates treatment.
Regarding your concerns about recovery and stabilization, it is essential to have realistic expectations. Some neurological conditions can stabilize, while others may progress. The key to managing your situation is ongoing communication with your healthcare team, including neurologists, physiatrists, and possibly pain management specialists. Regular follow-ups and adjustments to your treatment plan based on your symptoms and any new findings are crucial.

In terms of maintaining stability, engaging in physical therapy may help improve your strength and mobility, and occupational therapy can assist in adapting your environment to your needs. Psychological support is also vital, as coping with chronic illness can take a toll on mental health. Support groups or counseling may provide additional resources and emotional support.

In conclusion, while the path ahead may seem uncertain, it is essential to remain proactive in your care. Seek second opinions if necessary, and ensure that you are receiving comprehensive evaluations to explore all potential causes of your symptoms. Your health journey is unique, and with the right support and management, there is hope for maintaining quality of life despite the challenges you face.

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