African Americans with MS?

[KevsLuv]

I am a 30 year old AA woman. I was diagnosed in March of 2014, 1 month after my wedding.

My neuro told me that AA people generally have more aggressive MS. I'm not sure I believe that since it affects each MS-er differently.

[Queen Lavee]

I am a 30 year old AA woman. I was diagnosed in March of 2014, 1 month after my wedding.

My neuro told me that AA people generally have more aggressive MS. I'm not sure I believe that since it affects each MS-er differently.

I have never heard that before. In attending shared solutions MS meetings in my area and connecting with others I have not seen that.

[jreagan70]

My neuro told me that AA people generally have more aggressive MS. I'm not sure I believe that since it affects each MS-er differently.

Your neuro has the advantage of learning from a very broad base of scientific information. We all can benefit from learning from scholarly sources, i.e., people who have already done the studies on a large objective scale that our own observations and experiences can't begin to match.

MS affecting everyone differently doesn't mean that there aren't biological trends. There are numerous studies that back up what your neuro said. These are just a couple.


Clinical characteristics of African Americans vs Caucasian Americans with multiple sclerosis.
Neurology. 2004 Dec 14;63(11):2039-45.

Abstract

BACKGROUND: African American (AA) individuals are thought to develop multiple sclerosis (MS) less frequently than Caucasian American (CA) individuals.
<snip>
CONCLUSIONS: Compared with multiple sclerosis (MS) in Caucasian Americans, African American patients with MS have a greater likelihood of developing opticospinal MS and transverse myelitis and have a more aggressive disease course.
[To associate this conclusion with current information, right about the time this article was published, opticospinal MS was identified to actually be neuromyelitis optica, and is not MS at all.]


MRI correlates of disability in African-Americans with multiple sclerosis.
Pols One. 2012;7(8):e43061. doi: 10.1371/journal.pone.0043061. Epub 2012 Aug 10.

Abstract

OBJECTIVES: Multiple sclerosis (MS) in African-Americans (AAs) is characterized by more rapid disease progression and poorer response to treatment than in Caucasian-Americans (CAs). MRI provides useful and non-invasive tools to investigate the pathological substrate of clinical progression. The aim of our study was to compare MRI measures of brain damage between AAs and CAs with MS.
<snip>
CONCLUSIONS: By studying a quite large sample of well demographically and clinically matched CA and AA patients with a homogeneous MRI protocol we showed that higher lesion accumulation rather than pronounced brain volume decrease might explain the early progress to ambulatory assistance of AAs with MS.

[KevsLuv]

I have never heard that before. In attending shared solutions MS meetings in my area and connecting with others I have not seen that.

Yeah, this was her reason for starting me on Rebif as my 1st DMT rather than Copaxone or Avonex. She said that she wanted to treat me a bit more agrressively than she normally treats newly diagnosed patients.

[karenwb2]

AFRICAN AMERICANS WITH MS

Hello everyone. I am also an AA woman in the state of Georgia. I have had MS since March 2013. I am the mother of 2 wonderful children. My husband and I have been married for 24 years this August. I am a Special Education Teacher of 26 years. My MS started with numbness and tingling in my legs and arms. After the MRI and Spinal Tap it was confirmed that I have MS.

As far as medicines go I have taken 3. Copaxone. tecfidera, and now Gilenya. The Gilenya seems to be the best so far. No shots, no swollen areas, no stomach problems, it is good that all of that is over. I will write more later about myself. IF you have any questions to ask please feel free to ask. I think that this is a group that can help so many people.

talk to you later,
Karenwb2:

[KevsLuv]

.

As far as medicines go I have taken 3. Copaxone. tecfidera, and now Gilenya. The Gilenya seems to be the best so far.

Karenwb2:

I felt pretty good while on gilenya after the first few days. I was recently taken off of it because my WBC dropped far too low. It's been over a month and my counts are still very low.

I had high hopes for gilenya and have no idea which med is next. Im begging for lemtrada but my neuro said she hasn't gotten any approvals from insurance for any of her patients so far. Many of her patients are worse off than me and have failed more than 2 meds.

Sorry, I'm rambling. Lol. I do hope gilenya works well for u!

[palmtree]

Quote:
Originally Posted by alishape
I have had to revise my definition of what it means to be a strong black woman.

I was also that independent and strong black woman. Superwoman in every sense of the word. I look back in amazement. That is probably how each of you feel. I now realize that I was not invincible. Like you, MS forced me to step back or sit my butt down and really think about this. I knew that I wasn't going to give up and self-pity was not an option.

Everybody has something. We happen to have MS. My first step was to accept it! Ok. I have MS and I am still living. So, now I have to adjust my lifestyle. That is sometimes a challenge because of the unexpected daily changes. But, I can adjust for the big constant...Fatigue. Some days I can barely move...key word..,barely! I use the energy that I can muster up to do the things that make ME feel a little better. For me...that is saying my prayers, taking a shower, doing my hair, make-up and getting dressed. It may take awhile but it helps lift my morale and tends to give me a little more energy. Now, I say, "There's that strong black woman again. Ok. Let's get going." It is mind over matter and it works for me (most of the time).

I am accustomed to defying all kinds of odds. That includes childhood, school, workplace, marriage, family, etc. MS is just another challenge. Understand the rules and play the game. I/we made things happen and would often look back and wonder how I made it happen again and again.

I am grateful for every moment. I may not be able to do all of the things that I have enjoyed in the past. But, honestly, I really don't need to do all of the things I have done in the past. But, it's a new chapter in my life. I will do what I really enjoy at a slower pace and discover other things that I can enjoy or excel in. I will not stop smiling and living as long as I am living! When the going gets tough I pray for strength and peace. Hey, think about it. We are STILL strong women....strong black women. That has not changed!

You are terrific!!! There is so much wisdom in your post. I am bumping it up.

[tellnhelen]

Just Checkn in..givin a littyle update

[SIZE=1]Hi Evolvn916..it's tellnhelen. Im 61and going on to 62. Over these last 20 or so years with MS, I have gone from walking and working full time to retired with a cane for afew years,then a scooter for distance a and now for the past 3 years, a power wheelchair. My dx went from rr to pr. which basically means that I loose something when I have an episode. So it's real important that I avoid infections of any kind and the resulting episode. Started meds with Avonex, then Rebif, then LDS, then Tysabri, then Tecfedera, and now Aubagio. Do n't know what meds do, just scared not to take 'em. Had congestive heart failure last year which meant hospital and rehab

I see others with long time MS still walking and wonder what I'm doing wrong. Been through lots of PT and other exercise but when my balance left me I could no longer use a cane and REFUSE to use a walker. So I can stand when needed (practice up to 5 minutes) or when I'm moved. So I'm on my chair mostly for safety (live alone) and so I can keep up with world around me. Keep thinking I just haven't met the right therapist

I don't post a lot anywhere but came here tonight saw you and though to say hello.IZE]