Newly Diagnosed Introduction

New members should feel free to introduce themselves here
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Mguncch
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Joined: Tue Jun 30, 2020 5:25 pm

Newly Diagnosed Introduction

Post by Mguncch » Sat Jul 04, 2020 2:03 pm

Hi Everyone,

Monday, June 29, 2020. 3:00pm. Dr. Mark Skeen, Chief Clinical Neurologist of Duke Health in Durham, NC looks at me and said, “Yes, today’s two MRI’s confirm my suspicions. Now, let’s focus on medicine over the next weeks, so that we can attack this!”

For nearly two years, I have been in and out of 3 different Neurologist offices from Lumberton to Charlotte to Durham. Test after test. Appointment after appointment. Opinion after opinion. Today, I thank God for what I heard, because this test shall be my next testimony. God has ordered my life for Him to get ALL THE GLORY!

I am 47 years old and blessed to have a supportive husband, daughter, parents, and in-laws, primary care physician, MS Neurologist, MS Nurse, family, and friends willing to go through this new journey with me! So, with that being said, I have been officially been diagnosed with Multiple Sclerosis (MS) and I stand on God’s Word!

After much investigation into the different drug therapies, I have decided to take Tecfidera. I am concerned about how to manage side effects, as well as how to keep a daily routine of good nutrition and health. I look forward to any and all replies. Thank you all in advance!

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Scott1
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Re: Newly Diagnosed Introduction

Post by Scott1 » Sat Jul 04, 2020 10:21 pm

Hi,
The first thing to do, as Tecfidera is your choice, is to ask for a test for John Cunningham Virus (JCV). If you search for "FDA" and "Tecfidera" you quickly find the FDA notes or go here - https://www.accessdata.fda.gov/drugsatf ... 014lbl.pdf . As part of the prescribing protocol, your neurologist should check if you have this virus.

Tecfidera and a range of other MS medications act to reduce the effectiveness of some of your T cells that control JCV.
Uncontrolled JCV may become a demylinating disease called Progressive multifocal leukoencephalopathy or PML. That is something you don't want. It will most probably kill you. Ask for a test for JCV before you start Tecfidera.
Don't accept a comment that the likelihood is low.

As you are new to being diagnosed with MS, some things might surprise you as you go along. The purpose of this forum is to share experiences and learn from what others have already dealt with. Don't hesitate to ask or to be frank with details.
There are many different avenues to explore but specific issues are easier to respond to than generalities.
Good luck and welcome to the club!
Regards,

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NHE
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Re: Newly Diagnosed Introduction

Post by NHE » Sun Jul 05, 2020 6:58 am

Hi Mguncch,
Mguncch wrote:
Sat Jul 04, 2020 2:03 pm
After much investigation into the different drug therapies, I have decided to take Tecfidera. I am concerned about how to manage side effects, as well as how to keep a daily routine of good nutrition and health. I look forward to any and all replies. Thank you all in advance!
There have been two recently approved analogs of Tecfidera. One of which (Vumerity made by Biogen) has been clinically shown to have less GI side effects. It would be good to ask your doctor about them.

Vumerity: viewforum.php?f=64

Bafiertam: viewforum.php?f=65

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