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Wednesday, May 21, 2008

Special guest Suzanne Caroll sounds off on essential questions

Below please read this important email from Suzanne Caroll regarding my "essential questions." Thanks Susan :)

Hi Nadja - I am going to weigh in on your questions to the best of my ability.

1) What causes MS?
There is nothing definitive at this point, but there is speculation based on much study and data that is now available.
It would appear that there is a gene that is present in all that have MS.
This gene is turned on by yet to be determined factors, as they know that some who possess this gene never develop the disease.
Some of the factors under scrutiny are:
- measles or rubella as a young child
- mononucleosis
- other childhood viruses
- environmental factors

2) Can MS be cured?

No - not at this time... no matter what you may read as much as I hate to say this.
I believe the cure is no more than a decade off. It may come in the form of a vaccine.

3) Interferon's and other therapies absolutely do help. There is much data available to support this, and everything I am writing to you today.

Interferon's seem to be the most effective at slowing the progression of the disease.
Of the three interferon's available, the drug Rebif has the highest level of interferon available.

Even when the disease seems silent it is not silent inside the brain, that is why treatment is paramount for all of us!

4) Having a healthy lifestyle can benefit you very much no matter what your health condition,
however there is no data to suggest any of the things you mention have a direct correlation to the progression
of MS. All these things however will make you more comfortable, and that can never be a bad thing.
(when my leg muscles get very tight for several days and make it hard to walk naturally stretching is super
helpful for example, but stretching everyday does not make those episodes go away)

5) Every single person with MS is different - you must find what works best for you.
That took some time for me to find a proper balance that works for me - take it slow
as you rediscover your body in this new way. You'll find your comfortable path naturally.
Don't force yourself... ease into this gently... it's the kindest thing you can do for yourself.

• Last - I am currently on the drug Tysabri - it is a monoclonal antibody, not an interferon. I have been on
all of the interferon's over the past 15 years and they have done a great job for me. Through the years
I have had to change meds as my situation warranted it. It is so nice to have so many options. It makes
managing this a lot more successful over a long period of years.

I have 3 kids about your age, and 3 grandkids. (I had my first at age 20 - I am 52 now) I have owned my own advertising/PR business for 19 years, and
have owned, produced and hosted a very popular jazz show for 13 years. I do a live 4 hour show every Sunday.
I have traveled all over this country and Europe. I have a loving wonderful marriage.
I have done everything I dreamed of for my life and so much more... and I'm not done yet!!!!!!!
The MS didn't stop me, it made me realize I better get off my ass and grab life while the grabbing is good... and it's still good
all these years after my "d-day" (diagnosis day)!!!

I know how focused you are on this right now, but you won't always be. Most days I give it little of my thought unless
I am forced to by virtue of an annoying flair... or being delighted with involvement in an MS event to raise money,
or I am reaching out to someone sweet like you who is so new on her long journey. I for the most part live a very normal life.
Most people that I meet don't have any clue of my MS unless I make it known. I prefer to be known as the great jazz broadcaster
who happens to have MS, not the girl who has MS that is on the radio. I hope that makes sense.

I know you are looking for so many answers right now Nadja. Some you will find through your research, but many of them are yours to develop.
Your life is still very much in your hands even though it may not feel that way to you right now.

You can listen to my show on the internet while I am on the air every Sunday morning 8- noon EST by logging onto and then click on listen live. I'd love it if you would tune in sometime - it's a great way to kick back, groove out and enjoy.

Jazz hugs!


mdmhvonpa said...

#4 is my big pet peeve ... you gotta' take care of yourself or no one else will!

Denver Refashionista said...

I agree with you. It seems sometimes that the only people who get me are the other people with MS.

Nervus Rex said...

You are so *NOT* 52!