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Are you Newly Diagnosed with Multiple Sclerosis?

Here are the questions that I asked EVERY Neurologist
I had an appointment with:

(I typed a list of all my questions on the computer, before my appointments, and I made sure that I didn’t leave until I got all the answers to these questions!)

Remember, this is your life and your body. Ask your doctor as many questions as you want. Every question is an important one.
If you are wondering about something, ask it!

Every person’s experience, leading up to the diagnosis of MS, is different.
Use these questions, if you want, as a guideline to help you address the appropriate questions in your specific situation.

  1. Is this MS? If so, what TYPE of MS do I have? In the literature it indicates that there is Relapsing-remitting, primary-progressive, secondary-progressive, progressive relapsing & Benign. Is there any test to tell which one I have? What type of MS do you THINK I have?

  2. Are the symptoms of “tingling/numbing/stiffness” going to diminish or disappear? How long can these symptoms last?

  3. Is it possible for the tingling sensation to start in the left side of my body as well?

  4. Is the medicine going to help decrease or eliminate the symptoms? Or is it possible that I will always have this tingling sensation and that the medicine will only stop the progression to a different stage?

  5. How will I know if the medicine is working? Will I be symptom-free for a long time? Does the time vary for each individual?

  6. The MRI shows that I have 4-5 “white spots” or areas of inflammation in my brain --- is this a lot? Are these areas of inflammation, lesions or scar tissue? How big are they? Is this just the beginning phase?

  7. What parts of the brain are those “white spots” in? What does each area correspond to in terms of the functioning of my body? Should I expect that wherever there is a white spot, I will eventually have some symptom that corresponds to that area of the brain or is it possible that I might not have the symptom, especially on medication?

  8. What common side effects do you see with YOUR patients for each of the drug therapies? What if I have a side effect that is serious and I need to switch medications – is this going to affect the progression of the disease?

  9. Are there any tests that need to be taken on a regular basis (i.e., blood test, monitoring liver functions), as a result of being on any of the drug therapies? Do any of the drug therapies have the potential to negatively impact other bodily functions (ones that have nothing to do with having MS)

  10. Can this disease eventually progress to serious, debilitating stage EVEN with MEDICINE ? What’s the latest statistics on this?

  11. What should I expect to happen with my symptoms in the interim before I decide to go on medication? I noticed that sometimes I wake up in the middle of the night and I have a slight tingling on my OTHER side (leg mostly) --- is this to be expected? Is this something that will eventually mimic what I feel on the right side or will it be less intense? Does this have something to do with the size of the areas of inflammation in the brain? The tingling feeling on the left leg seems to sometimes go away during the day… What do you think?

  12. Are there any Vitamins I should be taking that would help in addition to the medication? What about DIET? I have been reading that a vegetarian diet is recommended – any validity that you know of to this statement?

  13. Does the menstrual cycle affect the severity of the exacerbations or the progression of the disease in any way? What about Menopause? Will this have any effect on the disease? Any data on this?

  14. If my mouth is still tingling/numb, should I be going to the dentist for a regular cleaning or do I have to wait until the symptoms diminish? Should I tell the dentist that I have this disease?

  15. Can exercise/weight training, walking, or massage help to diminish the symptoms?

  16. What other disease could this be? Are you sure that it is MS? What tests point to this conclusion? Have you tested for Lyme’s disease?

  17. If I make my decision (re: going on a drug therapy) within 8 weeks from when this began vs. 4 weeks – will this make a difference in the progression of the disease? I just want to confirm that the 4 weeks difference will not matter in the overall scheme of things. What does the statistical data show?

  18. If 2-5 years down the line a “pill form” is developed of one of the drugs, will I be able to switch to the pill form or can that have a negative effect on the progression of the disease?

  19. What statistical studies are available on the medications and is there any data available on “long-term” effects for each of these drug therapies?

  20. Will any of the medications alter my personality or moods in any way?

  21. How long will it take to determine what stage of this disease I am in? Is it possible that the medication will not work?

  22. How often do you recommend that I schedule an appointment with you?

  23. Will you be taking MRI’s and other tests on a regular basis OR will I just visit you every 6 months and have a regular neurological exam if I am doing well?

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“Your living is determined not so much by what life brings to you…
as by the attitude you bring life.”
-John Homer Mills

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