Hello and Welcome!

Hello and a warm welcome to the new My MSAA Community – supported by the Multiple Sclerosis Association of America (MSAA)!

My name is Sarah Masino and I am the Community Relations Coordinator at MSAA. I will be working with you to help make this community vibrant, inspiring, and full of information and resources for all of our members.

Whether you’re newly diagnosed and are looking for information and support, have been living with MS for many years and have experiences you’d like to share, or are a care partner with your own set of challenges – MSAA knows that everyone’s journey is unique. This community is your place to share your stories and support others affected by multiple sclerosis.

MSAA is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. We provide a wide range of services for the MS community in the United States - including our toll-free Helpline at (800) 532-7667, extension 154 and online chat feature; cooling accessories and assistive equipment; educational programs; informative videos and publications; a free mobile phone app, My MS Manager™; a resource database; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment options; and our website (mymsaa.org) featuring educational videos, downloadable publications, and news updates.

Several of us from MSAA will be posting on the community to keep you up to date with important news and information about what we do, how we can continue to support you, and how you may get involved.

As a member of My MSAA Community, there are a few things you can do to get started:

•Introduce yourself and start a discussion

•Review our community guidelines

•Meet others and offer your support and encouragement

We hope that this community provides you with the support, encouragement, advice, and information to help you wherever you are on your MS journey.

If you have any questions or need assistance, please send me a message or post a question and I’ll do my best to answer.

Thanks for reading,  

Sarah Masino 

Community Relations Coordinator at MSAA 


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7 Replies

  • Hi Sarah

    I sincerely hope that you are feeling as well as you possibly can be today? Thank you for the warm welcome it is genuinely appreciated, and it is wonderful to make your acquaintance.

    My wife has Primary Progressive MS, and was diagnosed about 4 years ago. This last 12 months or so she has deteriorated a great deal and has just taken early retirement from her job in a local college. Despite having some health issues of my own I am her main carer at this time.

    We currently have an intermediate care team coming in to help cook for us and help with any personal hygiene issue that we want to deal with, such as showering or hair washing etc. This is going to continue until our local Social Services department put a care package in place for us, which they are trying to do quickly. Then we will have a budget and be able to employ carers of our own choosing.

    It has been a terrible time for my wife, as I have seen a strong and independent career lady go downhill and now uses a walking frame in the home and a wheelchair whilst out as she can only walk a few yards at a time. She is having Rehabilitation and Neural Physiotherapy to try and give her a boost but it is not going too well for her. The Occupational Therapist has been wonderful and provided everything from bed risers to padded anti pressure sore boots.

    Anyway, that is our story, and please take care of yourself.

    All my hopes and dreams for you


  • Hi Ken,

    Thank you for sharing your story. Being a care giver for someone with MS can certainly be daunting with great demands.

    If you are in the US and need help finding any resources, please let me know.

    I hope that as we grow this community and others share similar experiences, you can offer advice and receive encouragement. I hope to continue to hear from you here.

    Take care,


  • Hello, I have had MS for the last 30 years, it's been possible to survive with good nutrition and exercise. Keep on going and always be positive!

  • Hi! I am new to this community. My name is Pat. I am 57 years young. My boy friend of 15 years informed me that he can't get past these MS problems that we have experienced and left me. He left me with over 400 in utility bills. I have no job, can't work and have to find a way to start over. "How"? Most important he taken my confidence away from me. I am sure that I need to go to counseling but I can't afford it. Is there counseling for MS patients. Open to any suggestions.

  • Well then he isn't worth it. Don't know anything about counseling for MS but I am sorry you had to deal with that. Much luck to you

  • Thank you for reaching out, Pat. I'm sorry for the situation you've experienced, no one has the right to try and take away your confidence; you deserve to be treated with respect and kindness. If you'd like to reach out to the MSAA's Helpline for resources and support please call phone (800) 532-7667, ext. 154.

    Take care,

    Angel Blair

    Client Services Specialist at MSAA

  • Hi let me start out by saying thank you for allowing me to join your group. I do not yet have my MS diagnosis, as I have only just begun the process. I have had a fibromyalgia diagnosis for the past four and a half years, but when I started to develop numb areas, the neurologist started me down this road. Idon't know how long it takes to get through all these tests or whether the NHS will change their minds yet again.

    I have been told it's all in your head since I was 28, and am now 52, it's been a long road already.

    I have had IBS forever, endometriosis for twelve years relieved by menopause which came early, migraines with aura, and cramps in my arms legs and hands also forever, Renauds syndrome, scoliosis spondyliosis otosclerosis, (I used to joke about collecting osis's like stamps lol) Then last year gallbladder pancreatitis.

    I'm just getting over a dvt PE with a buckle embolism, from April and am still taking warfarin, I didn't take that seriously at the beginning, so that's why it got so bad I actually had to start saying my goodbyes.

    I thought that was going to be the worst Dx I ever got.

    Little did I know, and I have to say, this, if it IS diagnosed its one "osis" ' too far!

    That said I'm hoping you all are having the best day possible, and will continue to do so.

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