Call a UCD Nurse Advocate who can discuss resources that may help you along your journey: 1-833-646-9823.
1How often do you feel irritable, moody, or uncooperative?
1Has anyone in your family been diagnosed with OTC?
2How often do you feel suddenly tired or exhausted?
3How often do you miss work or social gatherings because of the way you are feeling?
4How often do you have trouble communicating or enjoying yourself in social settings?
5Have you ever changed any of your behaviors or activities to get relief from these symptoms?
6Did any of the symptoms you experienced get worse during pregnancy or after giving birth?
7Have you ever had to go to the emergency room because of your symptoms?
How many times?
8
Have you had any hyperammonemic crises?
How many times?
9Have you had an ammonia level blood test before?
What was the month and year? (optional)
What were the results? (optional)
10Have other women in your family had similar symptoms: mother/grandmother/aunt/niece/child?
1How often do you find yourself staring or "zoning out"?
2How often do you find yourself forgetting things?
3How often do you get headaches or migraines?
4How often do you experience confusion or "brain fog"?
5How often do you have trouble focusing or learning new things?
6How often do you have problems with balance and/or depth perception?
7How often do you have trouble forming sentences or writing?
1How often do you experience nausea?
2How often do you experience vomiting?
3How often do you have a poor appetite?
4How often do you eat protein (chicken, beef, fish, nuts, yogurt)?
5How often do you feel sick after eating protein (chicken, beef, fish, nuts, yogurt)?
6How often do you have other stomach troubles?
What are your other stomach troubles?
Review your answers and if they are correct, click the save button so you can download them to share with your doctor. If you want to change your answers, click on the edit button and make your changes before you save them.
Behavioral
Quality of life
Neurological (the brain and the nerves)
Gastrointestinal (the stomach and intestines)
If you marked “Sometimes”, “Often” or “Frequently” for any of these symptoms, it’s important to share your results with your doctor. These symptoms may be signs that you are experiencing elevated ammonia levels and may benefit from a management plan. Bring this survey to your next appointment to help you start the conversation with your doctor. You can come back and take the symptom assessor again before every doctor appointment to track any changes in your responses.
1Could I be experiencing these symptoms because I am an OTC carrier?
2Could these symptoms mean that I sometimes have too much ammonia in my body?
3What are the risks of having too much ammonia in my body?
4Should I be tested for OTC Deficiency?
5Are there other members of my family who should be tested for OTC Deficiency?
6What treatments are available to help manage my symptoms?
7Other questions:
Don’t be afraid to tell your healthcare team if you’re worried about your health.
Try to be specific. Instead of saying, “I don’t feel right,” say something like, “I have severe headaches after eating certain foods.”
If you don’t understand, ask for a clear explanation. It’s better to ask several times than to leave confused or unsure!
