Care for Patients with Multiple Sclerosis (MS)
Dear Dr.
Hou,
It is quite rare to find a specialist in multiple sclerosis (MS), and I have several questions to ask you regarding a patient.
The patient is a 67-year-old female who underwent surgery for unknown causes of syringomyelia in July 2002, resulting in paralysis below the cervical region and being bedridden.
In October 2002, she experienced complete loss of vision in both eyes and was diagnosed with MS at a medical center, although the MRI findings were not very supportive.
After steroid treatment, her vision improved slightly but did not return to baseline, and she still experiences mild nystagmus and poor color discrimination.
I would like to inquire about the following:
1.
Is it possible that there is a higher-level cause that could lead to the simultaneous occurrence of syringomyelia and MS?
2.
Given that the patient is paralyzed below the cervical region, are there any other symptoms of MS that could indicate a risk to life or signs of potential relapse that we should be aware of?
3.
Since steroid treatment has been discontinued, is it likely that her vision will only recover to its current state? The patient relies on watching television for entertainment, but now she can only listen to it.
4.
Due to the patient's difficulty in accessing medical care, is it appropriate for her to inform local hospitals or private clinics about her medical history for medication refills? (We are located in Chiayi.)
5.
What measures can be taken to avoid or prolong the time between relapses?
Thank you for your time and assistance.
Jean, 20~29 year old female. Ask Date: 2003/12/19
Dr. Hou Zhigong reply Rare Disease
Hello! First of all, I would like to express my sympathy for your recent experiences and hope that your confidence and willpower can strengthen as you fight against this illness.
Due to my lack of detailed information regarding your medical history, neurological examinations, and past laboratory and imaging data, I am unable to provide specific answers to some of your individual questions.
However, I can offer some general academic insights.
Multiple sclerosis (MS) is caused by demyelination in the central nervous system, which includes the brain, brainstem, cerebellum, and spinal cord.
The myelin sheath serves as an insulator in the brain, and any issues with it can lead to disruptions in nerve conduction, resulting in this condition.
The exact cause of demyelination is not fully understood in the medical community, but it is generally believed to be due to an autoimmune disorder affecting the central nervous system, where antibodies attack the myelin sheath.
There are many variants of demyelinating diseases, and MS is just one of them.
Therefore, until a diagnosis is confirmed, we typically refer to it as "demyelinating disease" rather than hastily diagnosing it as MS.
Syringomyelia is a condition where a cyst forms in the center of the spinal cord due to various factors, leading to obstruction of nerve pathways within the spinal cord.
The symptoms depend on the location and size of the cyst.
Generally, if it occurs in the cervical spine, it can cause sensory or motor deficits in the limbs, and if the cyst is large enough, it may result in paralysis of the lower body.
It was previously thought that this condition was caused by congenital malformations, so if you happen to have both demyelinating lesions and syringomyelia, it is not impossible.
In recent years, some case reports have suggested a correlation between these two diseases, hypothesizing that demyelinating lesions in the spinal cord may lead to tissue damage that subsequently forms a cyst, particularly in a specific type of demyelinating disease known as Devic's disease (neuromyelitis optica), which is more likely to cause syringomyelia.
Devic's disease affects only the spinal cord and optic nerves without impacting the brain and cerebellum, making it distinct from MS.
This is why I strongly suspect that you may have this condition rather than typical MS.
The prognosis after experiencing optic neuritis varies from person to person; some individuals recover their vision well, while others may not have an ideal recovery.
The general treatment involves the use of corticosteroids (possibly combined with immunosuppressants), starting with intravenous administration and then transitioning to oral medication after one to two weeks, gradually tapering off over two to three months.
I believe you will need to be patient for a while longer to see how your vision recovers.
As for the cause of your paralysis, whether it is due to syringomyelia, Devic's disease itself, or surgical complications, I cannot provide an answer.
Regarding life-threatening risks, if demyelination affects the third or fourth cervical vertebra or higher, it could potentially lead to respiratory difficulties, which is the most dangerous scenario.
Even if that does not occur, your current mobility issues and incontinence can easily lead to infections, so if you experience respiratory distress or fever, it is crucial to seek medical attention promptly, preferably at the hospital where you were originally diagnosed.
As for preventing recurrence, current medical literature does not seem to have comprehensive experience with Devic's disease.
However, since its pathogenic mechanism may be similar to that of MS, the administration of interferon could be very beneficial.
Interferon must be administered every other day and can cause flu-like side effects, which can be uncomfortable at times, but enduring these side effects is worth it for your long-term health.
It requires prior approval from the health insurance bureau, and your physician must provide detailed medical records for review.
Therefore, I recommend that you return to your original physician (likely a neurologist) to seek their advice.
Please forgive any inaccuracies in my response, as it is based solely on the information you provided.
I hope my response is helpful to you, and I wish you a swift improvement in your condition!
Sincerely,
Dr.
Hou Chih-Kung, Neurology, Chi Mei Medical Center
Reply Date: 2003/12/19
More Info
Caring for patients with Multiple Sclerosis (MS) can be complex, especially when there are additional neurological conditions such as syringomyelia (spinal cord cysts). In the case presented, the patient has a history of syringomyelia and was diagnosed with MS, which raises several important considerations regarding their care and management.
1. Potential Underlying Causes: The simultaneous occurrence of syringomyelia and MS is indeed intriguing. While syringomyelia is often associated with Chiari malformations or spinal cord injuries, it can also arise from other conditions that affect the spinal cord. In some cases, demyelinating diseases like MS can lead to secondary changes in the spinal cord, potentially contributing to the formation of a syrinx. It is essential to conduct thorough imaging studies and neurological evaluations to explore any underlying causes that may link these two conditions.
2. Life-Threatening Symptoms and Relapse Indicators: For a patient with MS who is also experiencing paralysis below the neck, it is crucial to monitor for symptoms that could indicate a life-threatening situation. These include respiratory difficulties, which can occur if the demyelination affects the cervical spinal cord. Additionally, signs of infection, such as fever or increased spasticity, should be taken seriously, as immobility can lead to complications like urinary tract infections or pneumonia. Patients and caregivers should be educated on recognizing these symptoms and seeking prompt medical attention.
3. Vision Recovery Post-Steroid Treatment: The recovery of vision after steroid treatment for optic neuritis can vary significantly among individuals. While some patients experience substantial recovery, others may have persistent deficits. After stopping steroids, it is possible that the patient's vision may stabilize at its current level, but there is still a chance for gradual improvement over time. Regular follow-ups with an ophthalmologist and neurologist are crucial to monitor any changes in vision and adjust treatment plans accordingly.
4. Accessing Care in Local Facilities: Given the patient's mobility challenges, it is advisable to communicate their medical history clearly to local healthcare providers, whether in a regional hospital or a private clinic. These providers should be informed about the patient's MS diagnosis, history of syringomyelia, and current symptoms to ensure appropriate management and medication prescriptions. Telemedicine options may also be explored for follow-up consultations with specialists if travel is difficult.
5. Preventing Relapses: While there is no guaranteed way to prevent relapses in MS, certain strategies can help manage the condition and potentially prolong periods of stability. These include adhering to prescribed disease-modifying therapies (DMTs), maintaining a healthy lifestyle with regular physical activity (as tolerated), managing stress, and avoiding known triggers such as extreme heat or infections. Regular follow-ups with a neurologist specializing in MS can help tailor treatment plans to the patient's specific needs and monitor for any signs of disease progression.
In summary, managing a patient with MS and syringomyelia requires a multidisciplinary approach, including regular monitoring, education on symptom recognition, and access to appropriate medical care. Collaboration between neurologists, primary care providers, and rehabilitation specialists can significantly improve the quality of life for patients facing these challenges. It is essential to maintain open communication with healthcare providers and advocate for the patient's needs to ensure comprehensive care.
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