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Frequently Asked Questions 

Question:

How can I prepare for a successful Doctor’s appointment?

 

Answer:

Often visits with our doctors tend to go quickly and we forget what we wanted to ask, or information we felt we needed to share with the doctor. The best way to make the most of your doctor appointments is to be prepared prior to the appointment. Most facilities allow one person to attend the appointment with the patient. Sharing and review your concerns with the person who will be attending your appointment with you (caregiver, family member or close friend), and making notes of the questions and concerns you have prior to the appointment, assures that they will be addressed.

 

Best practice tips

 

Before the appointment, make a list of issues that you want to address.  Write them out as questions to ask.

 

Keep notes of what symptoms you have, what triggers they may have, what makes them better or worse, so that you can share this information as well.

 

If possible, you can offer pictures or videos, such as a picture of a rash caused by a medication or a video of a seizure.

 

During the appointment the other individual can take notes for you, as multi-tasking is often difficult for AE patients. It is helpful to ask the person attending the appointment with you to remind you to ask what the next steps to address concerns will be. They can also help remind you if there are any issues that you wanted to address that you did not bring up.

 

“Next Steps” phase of the Doctor’s appointment

 

This phase of the doctor’s appointment covers common treatment follow up and planning. This is often referred to as “what are the next steps” for example:

Do you need any refills on your prescriptions?

Will there be any changes in your medications? Ask the doctor to explain why they have made a change to your medication. Is it because they feel one particular medication will work better for you?

Is a decrease in medication dose or frequency due to any lab levels that were found to be high or out of range?  Is the doctor concerned about side effects you have reported and wanting to adjust dosing to address that?   Is there anything you should watch for if a medication is decreased, and should you report it to the doctor?

Are there any tests that you are due to have? What needs to be done if you need tests, will you need a referral or prescription for the test? Are there any directions you will need to follow prior to the test such as fasting, or keeping hydrated? What telephone number or steps do you need to take to schedule the test?

Are there any specialists that the doctor wants you to see? Sometimes a neurologist may make a referral to a epileptologist, a specialist in seizures, if there are issues controlling seizures. A doctor may also make referrals to a physiatrist, a doctor who specializes in rehabilitation. If you have had rehabilitation but are still having an issue in a specific area, the doctor may be able to prescribe therapy services to a therapist in the area that you would continue to work on such as speech therapy or cognitive therapy.

Always ask for a prescription for these services and a referral as to who you should see. You may need to make sure if that individual is in network for your insurance.

If you are having issues obtaining therapy services or approval for medications or therapy, let your doctor know, and ask if he has a nurse, nurse case manager or social worker who can help you obtain approval for the services he is recommending.

Find out when the doctor wants to see you again and make a follow up appointment with the doctor’s office staff before you leave.

 

 

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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