Autoimmune Disorders: Questions to Ask Your Doctor

Q: Autoimmune Disorders: Questions to Ask Your Doctor

Hello, thank you for your question. <br>Here are my responses： <br>1. <br>Is autonomic nervous system dysfunction included in immune system diseases, or should I consult another specialty? --> Autonomic nervous system dysfunction is not related to the immune system, but immune sy

Immune system?

Hello, Doctor: I previously asked you about issues related to rheumatology and immunology, specifically about skin pain and itching.
I believe I may have lupus erythematosus, and the doctors have suggested further monitoring.
The patient has been experiencing persistent low-grade fever, and subsequently, more corticosteroids were prescribed.
I returned for a follow-up appointment today, and I had blood drawn three days ago, so I reviewed the report today.
The doctor mentioned that this blood test result was acceptable, but the immune system markers are still elevated.
So, what exactly is my condition? I informed the doctor that since taking corticosteroids, I no longer have a fever, but I still experience headaches and skin burning and tingling sensations.
Two days ago, my headaches worsened, and I felt tightness and pain in my chest, along with discomfort in my breathing.
Then I experienced numbness from head to toe, and eventually returned to my original state of skin discomfort.
Last night, I started feeling chest tightness and pain again, followed by facial numbness.
The doctor suspects I might have autonomic nervous system dysregulation and prescribed (Zanax).

I have a couple of questions:
1.
Does autonomic nervous system dysregulation fall under immune system disorders, or should I consult another specialist?
2.
The blood test results were acceptable, but the immune system markers are still elevated.
If you were in my position and didn't understand these medical details, what questions should I be asking? The immunologist didn't provide much information during the first blood test review, but I am still required to take (corticosteroids twice daily, Zanax, quinine twice daily, medications for peripheral improvement, stroke prevention, gastrointestinal ulcer prevention, and iron supplements).
Does this mean that the immune system issue will require ongoing medication and follow-ups? I feel like I'm left in limbo...
I apologize for being frustrated, but could you help me think of what questions I should ask?

Gui Nu, 30~39 year old female. Ask Date: 2022/09/29

Dr. Gao Jiankai reply Internal Medicine

Hello, thank you for your question.
Here are my responses:
1.
Is autonomic nervous system dysfunction included in immune system diseases, or should I consult another specialty? --> Autonomic nervous system dysfunction is not related to the immune system, but immune system diseases can lead to autonomic nervous system dysfunction.
Generally, many physiological diseases over time can also lead to issues with autonomic nervous system dysfunction.
I recommend continuing with your current medications; if there is limited improvement, you can discuss with your physician, and if necessary, consider seeing a neurologist.
2.
The blood test results are fine, but the immune system markers are still high! If the physician were in my position and didn't understand these specialties, what questions should I ask? 🤔😅 Because this immunologist didn’t say much about the blood test results the first time, but I still have to take (steroids *2, Zanaflex, quinine *2, medications for peripheral improvement, stroke prevention, gastrointestinal ulcer prevention, iron supplements)...
does this mean that the issues with my immune system can only be managed by continuing these medications and follow-ups? --> If you are still concerned, you can ask if it’s possible to stop the medication.
What lifestyle adjustments can I make if I stop taking the medication? Generally, if the blood test results are acceptable, you might consider stopping the medication, adjusting your daily routine, and continuing to monitor your condition.
Some early rheumatic diseases can indeed be difficult to diagnose initially and often require follow-up over time for the disease to present clearly, but they may also remain in a gray area.
Whether to use medication at this point should also consider the severity of the patient's symptoms and their anxiety about the medication, so it is still advisable to discuss this with your physician.

Changhua Hospital, Department of Allergy, Immunology, and Rheumatology, cares about you.

Reply Date: 2022/09/29

More Info

When dealing with autoimmune disorders, it’s crucial to have a clear understanding of your condition and the treatment options available. Based on your symptoms and the information provided, here are some insights and questions you might consider discussing with your doctor.

Understanding Your Condition
Autoimmune disorders, such as lupus (systemic lupus erythematosus), occur when the immune system mistakenly attacks the body’s own tissues. Symptoms can vary widely, including persistent low-grade fevers, skin rashes, joint pain, and neurological symptoms such as headaches and numbness. The fact that your blood tests show elevated immune system markers suggests ongoing inflammation or immune activity, which is common in autoimmune conditions.

Questions to Ask Your Doctor
1. What specific autoimmune disorder do you suspect I have?
- Understanding the exact diagnosis can help you learn more about your condition and its implications.

2. What do my blood test results indicate?
- Ask for clarification on what the elevated immune markers mean and how they relate to your symptoms.

3. What is the purpose of the medications I’m currently taking?
- Understanding how steroids, such as prednisone, and other medications like azathioprine or hydroxychloroquine work can help you manage expectations regarding their effects and side effects.

4. Are there alternative treatments or lifestyle changes I can consider?
- Inquire about dietary changes, physical therapy, or other non-pharmacological interventions that may help manage your symptoms.

5. How often should I have follow-up appointments and blood tests?
- Regular monitoring is essential in autoimmune diseases to assess disease activity and medication effectiveness.

6. What symptoms should prompt me to seek immediate medical attention?
- Knowing which symptoms are concerning can help you manage your health proactively.

7. Is there a possibility of complications from my condition?
- Understanding potential complications can help you prepare and possibly prevent them through early intervention.

8. Could my symptoms be related to autonomic nervous system dysfunction?
- Since you mentioned symptoms like chest pain and numbness, it’s worth discussing whether these could be linked to autonomic dysregulation.

9. What is the long-term outlook for my condition?
- Understanding the chronic nature of autoimmune diseases can help you set realistic expectations for treatment and lifestyle adjustments.

10. Is there a genetic component to my condition?
- If there’s a family history of autoimmune diseases, it might be helpful to discuss the potential for hereditary factors.

Additional Considerations
- Mental Health: Chronic illness can take a toll on mental health. Discussing your feelings of frustration and anxiety with your doctor may lead to referrals for counseling or support groups.

- Lifestyle Adjustments: Consider discussing dietary changes, stress management techniques, and exercise, as these can significantly impact your overall health and well-being.

- Medication Management: If you’re concerned about the long-term use of steroids and other medications, ask about tapering schedules or alternative therapies that may be less impactful on your body.

Conclusion
Navigating an autoimmune disorder can be complex and often requires a multidisciplinary approach. By asking the right questions and maintaining open communication with your healthcare provider, you can better manage your condition and improve your quality of life. Remember, it’s essential to advocate for your health and seek clarity on any aspect of your treatment that feels uncertain.

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