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Neurologist

A MyMSTeam Member asked a question 💭
Kitchener, ON

I go for my first consult with a neurologist on Friday. What are some questions I should ask and what should I tell them?

November 27, 2018
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A MyMSTeam Member

make sure you write your questions and symptoms before you go in!

November 27, 2018
A MyMSTeam Member

I would make a list of your symptoms (hope it's not a long one) so you can tell them. I would ask when you should call to make them aware of a new symptom (I think you'll be surprised at what they want you to tell them even when there is no change in meds). If this appointment will be to set up you starting DMDs, I would ask what side effects you should report are (I "tough it out" for some sides that really were a sign that the med was not for me. (that's not a bad thing) I would ask if going to physical therapy makes sense for you (I know, why would you need that? (I didn't know how much it helped) Most importantly, I would repeat to myself that I'm going to be fine

November 27, 2018
A MyMSTeam Member

i have found tecfidera to be very helpful with curbing symptoms. I was on copazone for five years and beta seron for 10 years before that and am so glad I don't have to give myself a shot anymore!

November 27, 2018
A MyMSTeam Member

Ask about MS meds and how best to slow or STOP the progression!
Some data presented👇 by percentage:
@ Avonex decreases relapses by 30% and has no effect on brain atrophy.
@ Copaxone
Decreases relapse rates by 30%
Decreases brain atrophy by 20%
@ Aubagio Tablet
Decreases relapse rates by 30%
Decreases brain atrophy by 20%
@Gelenya
Decreases relapse rates by 60%
Decreases mri activity by 60 to 70%
Decreases brain atrophy by 34%
Chance to improve symptoms is moderately high.
@ Tysabri:
Decreases relapse rates by 67%
Decreases mri activity by 80%
Decreases brain atrophy by 45%
Don’t use this medication if you are JCV positive.
@ Tecfidera. Tablets
Decreases relapse rates by 50%
Decreases mri activity by 50%
Decreases brain atrophy by 30% @ Rebif is Interferon beta 1a, which is also sold under the brand name of Avonex. Avonex is a slightly different formulation.
@ Ocrevus
decreases relapse rates by 80%
decreases mri activity by 95%
decreases brain atrophy by 45%
Chance of improving symptoms is very high in RRMS.
Decreasing relapse rates should be a must when fighting MS because a relapse can be unexpectedly horrific.
ALL the BEST!

November 27, 2018
A MyMSTeam Member

Ask how many MS patients the doctors have if s/he is not an MS specialist. If you are open to alternative treatments, ask what resources are available. Stanford has a whole group focused on PT and OT and they offer Yoga classes, etc.

November 27, 2018

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