Myasthenia Gravis: A Daughter's Concern for Her Mother's Health

Myasthenia Gravis - Symptoms in Mothers?

Hello Dr.
Chen, my mother is currently 65 years old.
Previously, she had difficulty speaking clearly and consulted many doctors in Kaohsiung and underwent a full health check-up.
Some doctors said there was no problem, while others suggested she might be developing a mental illness, which led to a lack of targeted treatment and wasted a lot of time—about five months of hospital visits.
Eventually, her symptoms worsened, with her speech becoming increasingly unclear and experiencing weakness in her limbs.
It was only later that she was diagnosed with myasthenia gravis.
I have searched for many articles on this condition, which is classified as a rare disease, and it seems that experienced doctors are needed for treatment.
She has an appointment with Dr.
Chiu Hao-Chang at Shin Kong Hospital in Taipei on May 15, but she needs to obtain her medical records from Kaohsiung Medical University on May 10 before going to Taipei.
However, yesterday, on May 6, she mentioned that she had been coughing all night and couldn't sleep well.
She said her throat felt uncomfortable and that she needed to cough up phlegm.
She has been eating very little, claiming that even a small amount makes her stomach feel bloated, and she chokes when eating.
When she lies down, she feels the urge to cough; she said that coughing provides some relief.
In the afternoon, she was coughing up phlegm very forcefully, and her voice sounded very alarming, as if her throat might be damaged.
She has been taking medication, but the doctor previously prescribed her a mucolytic for only seven days, and she has already finished it.
I told her to go for a walk-in appointment at Kaohsiung Medical University on Monday, May 7, but I know that walk-in appointments can be very challenging for elderly patients due to long wait times.
I suggested she consult with the doctor since we are not medical professionals and do not know the correct solution.
I am currently working away from home and cannot check on her condition, and only my retired father is with her.
When I returned home this week, I noticed she has lost a lot of weight.
I am worried that her body may not be able to withstand the wait until the appointment on the 15th in Taipei.
I would like to ask the doctor if it is necessary for her to cough up the phlegm.
Her symptoms are concerning, and I feel they are worsening.
After reading many articles, I wonder if there is a risk of aspiration pneumonia.
I would like to suggest that she visit your clinic for a walk-in appointment on Tuesday, May 8, but I am unsure if she can do so without her medical records.
Dr.
Chen, could you please respond? Thank you for your hard work!

Hui, 60~69 year old female. Ask Date: 2012/05/07

Dr. Chen Shunsheng reply Rare Disease

My email had some issues with Apple, which is why I'm only able to respond now.
The elderly patient has developed new-onset myasthenia gravis, and it is essential to investigate the underlying cause.
Additionally, there is indeed a problem with aspiration pneumonia.

Reply Date: 2012/05/07

More Info

Myasthenia Gravis (MG) is an autoimmune neuromuscular disorder characterized by weakness and rapid fatigue of voluntary muscles. It occurs when the immune system mistakenly attacks the communication between nerves and muscles, leading to muscle weakness. Your mother's symptoms, such as slurred speech and limb weakness, are indeed consistent with MG. It’s understandable that you are concerned about her health, especially given the complexity of her condition and the challenges in obtaining a timely and accurate diagnosis.

From your description, it seems that your mother has been experiencing significant health issues, including difficulty in speaking, weakness in her limbs, and respiratory problems. These symptoms can be particularly concerning in the context of MG, as respiratory muscle weakness can lead to serious complications, including respiratory failure. The fact that she has been coughing and struggling to clear her throat may indicate a potential risk for aspiration pneumonia, especially if she is having difficulty swallowing or managing secretions.

Given that your mother has already been diagnosed with MG, it is crucial to ensure that she is receiving appropriate treatment. Treatment for MG often includes medications such as anticholinesterase agents (like pyridostigmine), immunosuppressants, or even plasmapheresis in severe cases. Since she is experiencing worsening symptoms, it is essential to communicate these changes to her healthcare provider as soon as possible.
You mentioned that she has been prescribed medications but has run out of her expectorant. It is important for her to have access to medications that can help manage her symptoms, especially if she is having difficulty with mucus production. If she is experiencing significant respiratory distress or if her cough is producing thick or discolored sputum, it may be necessary to seek immediate medical attention.
In terms of managing her health, here are some recommendations:
1. Regular Monitoring: Keep track of her symptoms, including any changes in her ability to speak, swallow, or breathe. This information will be valuable for her healthcare team.

2. Medication Management: Ensure she has a sufficient supply of her medications, including any prescribed for managing her MG symptoms and respiratory issues. If she has difficulty obtaining her medications, consider reaching out to her healthcare provider for assistance.

3. Nutritional Support: Since you mentioned she is eating very little, it may be beneficial to consult with a nutritionist or her doctor about dietary modifications that can help her maintain her strength and health. Soft foods or nutritional supplements may be necessary if she is having difficulty swallowing.

4. Follow-Up Appointments: It’s crucial that she attends her follow-up appointments, especially with specialists who understand MG. If traveling to appointments is difficult, consider telehealth options if available.

5. Emergency Plan: Have a plan in place for emergencies, especially if she experiences severe respiratory distress. This may include knowing when to call for help or where to go for urgent care.

6. Support System: Since you are not always able to be there, ensure that your father or any other family members are aware of her condition and can assist her in managing her health.

7. Communication with Healthcare Providers: If she is unable to provide her medical history or current symptoms due to her condition, you may need to advocate for her by communicating with her doctors directly, providing them with updates on her condition.

In conclusion, your mother's health situation requires careful management and prompt attention to any worsening symptoms. It is essential to maintain open lines of communication with her healthcare providers and ensure she receives the necessary support and treatment. If you feel her condition is deteriorating, do not hesitate to seek immediate medical assistance. Your concern for her well-being is evident, and taking proactive steps can help ensure she receives the care she needs.

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