Thank you for your response?
Hello, I am a patient with acute intermittent porphyria.
You responded by saying (discuss with the attending physician, he will pay attention to the usage).
I was diagnosed with this condition at Linkou Chang Gung Memorial Hospital, but when I went to Kaohsiung Chang Gung, some doctors do not adopt the medication guidelines from Linkou Chang Gung regarding the usability and non-usability of medications based on my test results.
My medication manual has been lost, and some doctors do not refer to my previous prescription records when prescribing.
The doctors say that medications for neuropathy are unrelated to those for cold and asthma.
I remember my medication manual recorded all the medications that could or could not harm the nerves, but the doctors say it is irrelevant!!!!!???? Although most doctors at Kaohsiung Chang Gung are very good, I am now afraid of what kind of doctors I will encounter when seeking treatment.
Some doctors may reject patients with rare diseases, and now I find myself rejecting doctors; I am even afraid to seek medical attention for an asthma attack.
Zhang Peizhong, 30~39 year old female. Ask Date: 2012/02/17
Dr. Chen Shunsheng reply Rare Disease
Rare diseases require a highly specialized team.
For your issue, I recommend Dr.
Chih-Cheng Huang from the Department of Neurology, specializing in neuromuscular disorders.
He has trained at the Mayo Clinic in the United States, is very nice, and most importantly, I have informed him, and he will assist you!
Reply Date: 2012/02/17
More Info
Navigating the complexities of rare diseases like acute polyneuropathy can be incredibly challenging, especially when it comes to finding appropriate medical care and treatment. Your experience highlights several critical issues that many patients with rare conditions face, including the inconsistency in medical opinions, the loss of important medical records, and the anxiety associated with seeking care.
Acute polyneuropathy, particularly in the context of acute intermittent porphyria, is a rare condition that affects the peripheral nervous system. This can lead to a variety of symptoms, including muscle weakness, sensory disturbances, and autonomic dysfunction. The management of such conditions often requires a multidisciplinary approach, and it is essential for patients to have a healthcare team that is knowledgeable about their specific disease.
One of the primary challenges you mentioned is the inconsistency in treatment approaches among different physicians. This can be particularly frustrating when transitioning between healthcare facilities, as it seems that some doctors may not be familiar with your previous treatment history or the specific medications that have been effective or ineffective for you. It is crucial for healthcare providers to communicate effectively and share patient records to ensure continuity of care. If your medication handbook has been lost, it may be beneficial to request a detailed summary of your medical history from your previous healthcare provider. This can serve as a reference for new doctors and help them understand your treatment journey.
Another significant concern is the fear of encountering healthcare professionals who may not be receptive to treating patients with rare diseases. This fear can lead to avoidance of necessary medical care, which can exacerbate health issues. It is essential to advocate for yourself and seek out specialists who have experience with rare diseases. You might consider looking for neurologists or specialists in neuromuscular disorders who are affiliated with academic medical centers or research institutions, as they may have more exposure to rare conditions and be more willing to collaborate on your care.
In addition to seeking specialized care, there are several proactive steps you can take to manage your condition and reduce anxiety. First, consider joining support groups or online communities for patients with acute polyneuropathy or similar conditions. These groups can provide valuable emotional support, share experiences, and offer practical advice on navigating the healthcare system. Connecting with others who understand your situation can alleviate feelings of isolation and fear.
Furthermore, maintaining a healthy lifestyle can play a significant role in managing your symptoms. Regular exercise, a balanced diet, and stress management techniques such as mindfulness or yoga can contribute to overall well-being and may help mitigate some symptoms associated with your condition. While these lifestyle changes are not a substitute for medical treatment, they can complement your care and improve your quality of life.
Lastly, if you ever feel overwhelmed or uncertain about your treatment options, consider seeking a second opinion. It is your right as a patient to explore different perspectives on your health, and a second opinion can provide reassurance or alternative treatment strategies.
In summary, navigating the care for acute polyneuropathy requires persistence, effective communication with healthcare providers, and a proactive approach to managing your health. By advocating for yourself, seeking specialized care, and connecting with support networks, you can better navigate the challenges associated with your condition and work towards achieving the best possible outcomes. Remember, you are not alone in this journey, and there are resources and communities available to support you.
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