Hello and Welcome!

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

Staff from MSAA's National Headquarters will be posting here and there and working with you to help make this community vibrant, inspiring, and full of information and resources for all of our members. You can tell who we are when you see the "Admin" badge next to our "MSAA” names!

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; 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.

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

• Introduce yourself and start a discussion – add a “topic” and tags to your post to make it easier for others to find

• Review our community guidelines

• Meet others and offer your support and encouragement

• Type the @ symbol and a member’s username to reply directly to a member’s comment or post, and they will receive a notification automatically

• Use the search box to look up a specific topic you have a question about

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 a message or post a question to an MSAA admin and we’ll do our best to answer.

Thanks,

Your MSAA Family

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24 Replies

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  • 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

    Ken

  • 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!

  • Thank you MSAA_welcome that is genuinely appreciated. Sorry for my late reply as I had not received a notification.

    All my hopes and dreams for you

    Ken

  • Hi TheAuthor looks like l passed you at some point, for that lm truly sorry.

    Thank you for sharing your story. How is your wife and of course yourself doing now?

    Please know that this chat has grown into a huge family, ofMS'ers and there caregivers. So please jump in anytime :)

  • Thank you my friend. Sadly, Julie has deteriorated a great deal this year but is getting the best of care. I sincerely hope that you are as well as possible.

    All my hopes and dreams for you

    Ken

  • TheAuthor l am so sorry to hear about your wife. MS is a ever changing monster and we never know where it's going to take us.

    I pray that you are taking care of yourself also. I have suffered from stratis ( not sure of the spelling ) migraines most of my adult life. I hopeyou don't have thos.

    What do you write? We would all love to know :)

    Be well :) and talk soon .

  • Thank you my friend. We have both had a better day today so that has made us thankful. I write about many different genres from philosophy to modernity. I user to write was I was commissioned too by 3 different publishers but now I just write for fun!

    I am so genuinely sorry to read that you also suffer with migraines and I sincerely hope that you are as well today as you possibly can be?

    All my hopes and dreams for you

    Ken

  • TheAuthor lm so happy that you both had a better day! That always makes me smile. I hope you both took advantage of it?

    I don't get migraines as much anymore thank goodness. I also have meds to take if l feel it coming on.

    I give you a ton of credit for being able to write " on demand " as they say for publishers. I think that's how it works? To be honest l have no clue :) But always willing to learn new things, until l forget hahaha.

    I used to write alot, not so much anymore. I did share a one with this chat rm tho. They seemed to like it.

    So what do you write now?

    I hope you both have a wonderful day today also.

    Jes

    Ps l hope your checking out the other posts, and please feel free to join in or post anytime. :)

  • Thank you my friend that is genuinely appreciated :)

  • Wow! You sound ALOT like me. How do you start the process to get care in the home?? I requested help yesterday at my doctor's office. I have disability benefits but how do I get in home care?? I'm sorry to hear about your wife!! May God bless you and your family !!! This must be very hard on you. I live with my Dad and he helps as much as possible. He does have to work. It's good you are getting in home care!! God bless you !!

  • Hi doveflyfree

    Here in the UK we got access to care in the home via our 'Occupational Therapist.' During one of her visits to us she could see that I could not cope with looking after Julie due to my own personal health problems so she rang the intermediate care team and they came straight in. We have since been assessed by social services and have a care company come in when ever we want them too.

    So we have lunch made for us 4 days a week and an evening meal 5 nights a week plus any personal care on top. It has been a long process but well worth it.

    I want to sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Hi doveflyfree Another new face? Or did I just miss you :(

    Are you in the states? And asking your neuro for in home care? That should help you l would think, lm not for sure tho. You can also call MSAA and they can at least point you in the right direction .

    Toll-Free Helpline: (800) 532-7667 MSAA

    Please feel free to jump in anytime :) We talk about pretty much anything and everything here. But most of all support each other. :)

  • 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.

  • I don't know if this is the right place to respond to this but I have the healthunlocked app and I responded to another post using the app today. When I went to post it I got a notice that something went wrong so try again. I tried several times. My post is still there but grayed out. So I came on the browser to post that has not been a problem. I went back to the app and my grayed out post is still there. I tried reposting and still get the message that something went wrong. So I am posting through the browser which works, but something is definitely wrong with the app. Don't know if I should just try to replace the app or if you know of any other place to let the developers know that there is a problem.

  • Hey, itasara - sorry you are having trouble with HealthUnlocked's app to navigate and post on their various forums. As the app is run by HealthUnlocked themselves (and not us here at MSAA) and covers all of their patient forum websites, it would be best to contact them directly, either here:

    support.healthunlocked.com/...

    ...or by emailing HU Support at support@healthunlocked.com

    Vesa at HU - can you look into this issue as well?

    - John, MSAA

  • I just downloaded the new app update and so far I'm not having any problems. I only been on here a few minutes but not getting any of the messages or whatever I was having problems with before

  • Great to hear, itasara ! Glad your HU beta app is back up to speed.

    - John, MSAA

  • I'm new to this site!! My nurse helped me find this community. I was diagnosed with MS and spinal stenosis and degenerative disc disease as well as depression and anxiety over 8 years ago. I also had a blood clot go through my heart and into my lungs in May of2012. I now use a walker or wheel chair to get around. I live at home with my Dad. My mother had MS and died before she turned50 years old. I keep God close to me and He gets me through the episodes of the MS. I call them episodes not sure what else to call them. I break down sometimes crying and not even sure what I'm crying about. It's frustrating to live in this phase cuz my body can't do what my brain says. I just started Rebif a few weeks ago. Before that I was in denial about my health and having MS. I need help with showering and taking care of myself. Hopefully in home care will start soon. I appreciate your support!!! I normally don't share this much but I hope this helps someone who is struggling. May God bless you all!! Has anyone taken injections of Rebif?? Thank you for helping me !!

  • Hi doveflyfree

    Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read that you have been through so much and I want to sincerely wish you and your dad all the best of luck. Please take care of yourselves.

    All my hopes and dreams for both of you

    Ken

  • Thank you for your support !!! God bless you and your family !!!

    Sincerely

    Shawn

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