African Americans with MS?

[Evolvn916]

Hello. I am a 58 year African American woman with RR MS. I was initially diagnosed in 2009. I has no further symptoms to speak of until late 2012. My challenges increased in 2013 to include everything from tremors, balance issues, extreme fatigue, pain/numbness on my left side, low tolerance of cold temps and voice control issues. I now have a number of other issues as well. I didn't any treatments until 2013. I now take Tecfidera.

I have worked in Corporate America for 38 years. I have managed to be highly success but I had to step back and let it go. I could not handle the stress anymore along with MS. I reluctantly retired this year. It was a very difficult decision. My faith helps me through it one day at a time.

I realize that many of the challenges for us are no different than anyone else. However, I believe that we possibly deal with some situations that may be unique to our culture. I am very interested in understanding your challenges as African Americans with the disease and sharing thoughts. Let's talk.

[ru4cats]

Evolvn916

There is another website called Patients Like Me, and I didn't know if you had heard of it. I prefer MS World Forums, but there is an African American called TysabriSept08 who is on PLM. She lives in New York and has had MS for 32 years. You might like to converse with her. She has very definitive views about how MS affects African Americans, and she might be able to provide you with lots of information. Good luck!

[Evolvn916]

Thank you very much! I prefer MS World Forums too. I like the diversity that I see here. However, I would like to also reach out and engage with other African Americans on this site. Is that ok?

[MSW1963]

Evolvn916, just want to say welcome to MSWorld. I understand why you would like to compare notes and have discussions with MSers who share similar ancestry.

I know of one active MSWorld member who identified as AA female, but who unfortunately is not as actively posting lately. I think there are/were a couple of other members who do not post very often. I am interested in your MS experiences, including the opportunity to compare similarities and possible differences.

[Seasha]

Hi Evolvn -

There are African American members here for sure! There are a lot of members in general who do not post regularly, but maybe we (or you) can bump this thread up from time to time so it won't get lost in the shuffle.

[rdmc]

Hi Evolvn -

There are African American members here for sure! There are a lot of members in general who do not post regularly, but maybe we (or you) can bump this thread up from time to time so it won't get lost in the shuffle.

Good idea about bumping the thread to the top ever so often, because not everyone checks into the thread everyday and the key to getting responses will be to keep it up on the 1st page so our African American members will see it.

[ru4cats]

Good idea on bumping up the post. I know sometimes it takes a few days for the right person with some answers to see the post. I'll try to remember to help.

Evolvn916

I hope you find some answers, whether here or at PLM. I check in on both but find myself posting here more often. I agree on the diversity, but I have found answers on both. I also like PLM because "private messaging" someone is so much easier!

[football-mom]

Hi, I'm here. 46yo AA female, divorced with two teenaged sons, diagnosed 2011. Two years of Rebif and now almost a year on Tecfidera. Still work in the legal field full-time, though it has been a little tougher this year since I had a big relapse last fall. Still trucking though.

I will put my email address in my profile so you can find me if you would like.

[Queen Lavee]

AA female 47. Let's chat.

[Queen Lavee]

47 AA female
Do you mean like this...

Ok I finally got that MRI last week, 15 months post diagnosis I called my Neuro today for results.

I left a message, his PA returned my call but I missed it. A front office person returned that call and said...

It was abnormal worse than previous MRI maybe the Neuro will consider changing my current RX Copaxone in 6mo or maybe a year

I must say it.

WHAT THE HELL!

I will be calling back tomorrow to speak with the Neuro. Hope he's ready.

[Evolvn916]

Thanks all! I will bump the post every week or so. In the interim, I did check out PLM and another site also. I can't recall the name right now. As a result, I am finding value across the board. It's just different.

[Evolvn916]

Queen Lavee. That's terrible. That is not the kind of message you want to hear from someone who can not possibly answer your questions or address your concerns. She/he is just delivering a message. Argh!!!

I have had several conversations with my Neuro about similar situations. I sometimes have to really push to insist on talking to HIM. I understand their workload and that many patients have symptoms much worse than mine. But, I am just as important.

Good luck on getting better feedback next week!

[Evolvn916]

Thanks Football-mom!

[Queen Lavee]

Queen Lavee. That's terrible. That is not the kind of message you want to hear from someone who can not possibly answer your questions or address your concerns. She/he is just delivering a message. Argh!!!

I have had several conversations with my Neuro about similar situations. I sometimes have to really push to insist on talking to HIM. I understand their workload and that many patients have symptoms much worse than mine. But, I am just as important.


Good luck on getting better feedback next week!

The PA called me back today not realizing that I had already left a message and explained the results in detail.

All is well and copaxone is working. Yeah

[tellnhelen]

hey...I'm 60 yo female AA dxed around '92. doing my best to stay independent. have issues and come here for possible solutions. Will be looking for this thread sometime.