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How To Talk To Your Doctor About SPS

It’s never going to be easy navigating life with a rare disease as debilitating and idiosyncratic as Stiff Person Syndrome.

Below are a few videos and documents to help you navigate the conversations with you medical doctor. 

5 Ways To Deal With A Rare Disease

How to Take Notes & Ask Questions

Download The SPSRF Tip Sheet

Make a list of questions in advance of appointments.

Keep a notepad book.

  • Each visit is a new page.

  • You can refer back to previous notes and add new notes.

  • Mark the date, note with whom you are visiting and which tests the doctor orders.

Ask the Doctor for the best way to communicate with him and write down the contact information.

If the doctor wants to draw pictures and information, ask her to do it in your notebook.

Record the conversation so you can review and further process after the appointment.

Ask – is there anything I haven’t asked that you would ask if you were in my situation?

Ask where you can read more about what we have discussed.

Face Sheet – Bring This Information to Every Appointment

Download The SPSRF Face Sheet

This form organizes and summarizes your information so doctors can get a quick understanding of your condition, history, and medications.


  • Preparing in advance will allow you and your doctors to spend most of your appointment time discussing next steps like tests and treatment plans.

  • Make sure to update as things change.

  • Bring two copies of your face sheet to every appointment, one for you and one for the doctor.

Disclaimer: The content of this Website is provided for informational and educational purposes only, and does not in any way intend to substitute for professional medical advice, diagnosis, or treatment. The content is not intended to be medical advice for any particular person or patient and should not be relied upon as medical advice. You should always seek the advice of a physician or other qualified healthcare provider for medical advice, including any questions you may have regarding diagnosis or treatment of any medical condition.

Contributors to this document include: Jim Weiss, MD; Vered Lewy-Weiss, MD; Tara Zier, DDS and SPS patient.

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