Friday, January 09, 2009

Loaded questions

UPDATED with answers (well, if you can call them "answers"):

As we prepare to meet with my neurologist this afternoon, we've drafted a list of questions so that we don't go through the appointment, get in the car to drive home and halfway home say, "Doh! I meant to ask about..."

Questions for the neurologist:

1. Brain lesions vs. spinal lesions - Is there a different potential prognosis? What does this mean for me in the long term? Will lesions continue to appear in the brain? Will they spread down the spinal cord? Will they shrink with medications? Will new lesions grow if i have flair ups?

A: It's better to have them on the brain because the brain is bigger. (? exactly!) Unclear on the rest of the questions.

2. How much do you know about gluten / casein free diets in helping with MS?

A: Didn't mention this after the look on his face when we mentioned acupuncture and other complimentary care.

3. Would it be wise to speak with an immunologist to learn how to help strengthen my immune system?

A: Didn't ask this one.

4. How old are the lesions? if the one is typical of MS, what are the other 4? Is having 5 on the brain bad?

A: See #1

5. What about complimentary care: gluten-free diet? acupuncture? massage? physical therapy?

A: Got a look and then "well, you seem fine now so I don't think you need physical therapy."

6. Will the transverse myelitis on the neck go away or will it always be there?

A. Don't know.

7. Was there something alarming about my case or did it present as "typical MS"? What prompted all the tests so early?

A. I believe I said MS was at the top of the list when I saw you, if I'm not mistaken.

8. Does having the visual (and auditory?) delay mean that I'll likely have vision (hearing?) problems as I get older?

A. You already have vision problems.

9. Do we need to do a dye MRI to further confirm anything or get more information that would be helpful?

A. Yes, we'll do a dye MRI in a month or two to get a baseline image of my brain.

10. Does your practice work with trained counselors who help patients with MS?

A. Didn't ask.

11. What about having more children? We know there is little, if any, likelihood that our children will inherit the disease, but are there any concerns with MS and pregnancy or nursing?

A. Didn't ask.

12. Do I need to have a repeat MRI in a few months to determine if drugs are working?

A. Will likely have one every 6-12 months from here on out.

13. Is there a database for patients to enter their medical information? Since researchers don't quite know what causes MS but have seen trends in the disease, is there an ongoing collection of such personal information?

A. Didn't ask.

Whew . . . and big sigh.

1 comment:

nikole said...

What a thorough list of questions. I hope you feel a little lighter having answers. Thinking of you today and anxiously awaiting an update after your appointment.