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A MyEpilepsyTeam Member asked a question 💭
Minneapolis, MN

I thought of this question as I'm still working on this blood draw thing from previous recent posts and the Dr is asking me now what type of blood draw I want him to do. I keep saying, can you do the same thing as last time so we can compare it?

anyways, how often do you - or do you - send your doctors a summary of what your year has been like for your profile / patient file for their staff to reference quickly? Is that normal for you who work with multiple doctors so their staff have quick… read more

October 28, 2025
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A MyEpilepsyTeam Member

Recently, when I my neurologist had tests done, my GP is immediately sent (email) the results & the notes from the Doctor's (neurologist) appointment. It's in my profile of "who do I want to be able to see my records?". They are in 2 different medical systems.

October 29, 2025
A MyEpilepsyTeam Member

I’ve never had to do all that with any of my Dr.’s like Epileptologist / Neurologist .the only type of info. My Dr needed from me was my seizure calendar . The he/she can record what I have for seizures.

It was up to the Dr. to decide on blood levels with my meds. If levels we ere low, the Dr. would raise up my med. dose and would wait 3-6mos. Down the road to decide what direction to go with the meds.

Now your primary Dr. and other Drs that you have , may want update to what your specialist is doing for your meds and other basic stuff

October 28, 2025
A MyEpilepsyTeam Member

I have not had any problems with my patient portals and my doctors can see how I am doing. I was amazed when I had to have a procedure in another city and the nurse was able to pull up all the info she needed, which was nice because I take large doses of my medications and she was having trouble with the pharmacy in the hospital. She was able to show the pharmacist this was my normal and had been for the last 10 years or so

October 29, 2025
A MyEpilepsyTeam Member

It really depends on what the health system is like. In Aus the records are kept in a state and national data base then when ever you change practices they need to request permission to access the information. In the US it would either be similar to that or given its mainly private only the big health companies may have there own data bases and the drs need to request access from them.

October 28, 2025
MyEpilepsyTeam

How often should you send doctors a summary of your epilepsy management throughout the year?

There's no standard frequency for sending summaries to your doctors, but keeping them updated is helpful, especially when managing epilepsy with multiple providers. Many people find it useful to bring updated information to each Show Full Answer

How often should you send doctors a summary of your epilepsy management throughout the year?

There's no standard frequency for sending summaries to your doctors, but keeping them updated is helpful, especially when managing epilepsy with multiple providers. Many people find it useful to bring updated information to each appointment rather than sending regular summaries.

Here are some practical ways to keep your medical information organized and accessible:

- Keep all your doctor's visit summaries, epilepsy information, and test results in one designated spot - a drawer, binder, or even a neat stack works
- Use a notebook or smartphone to jot down questions as they come up, plus track seizure activity, medication changes, or side effects
- Bring your questions list to appointments so you can write down the answers
- Consider using tools like Seizure Tracker to log information and print reports/graphs to bring to appointments

For your blood draw question specifically, it's completely reasonable to request the same tests as before for comparison. You have the right to request detailed records from your medical providers, including previous test orders.

If you're working with multiple specialists, ask each office if they can access your records through a shared patient portal system. Many healthcare systems now allow different providers to view your history electronically, which helps ensure everyone has current information about your epilepsy management.

October 28, 2025

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A MyEpilepsyTeam Member asked a question 💭
ST. CLAIR SHORES, MI