Does anyone know about the MS Society?? I called them to get help a couple weeks ago and had an assessment done. The lady doingthe assessment said I qualified for more help than I asked for. I was sooo excited. My caseworker through MS Society was rude to me every time I talk to her. I just remained nice and told her I was sorry I even had MS. It was extremely difficult asking for help. Then a week goes by so I touch basis and was told to call the lions club and kiawanas club. The MS Society said they are NOT helping me. I'm blown away. They didn't even ask for a doctors form. Why would they say they will help with more than I asked for then refer me to places that don't help with MS???? I'm confused overwhelmed and scared and devastated. I think I should send a letter to someone in charge at MS Society. I don't even want to have MS!!!!! I'm soooo upset and extremely lost.
MS Society : Does anyone know about the MS... - My MSAA Community
MS Society
doveflyfree I'm so sorry that this has happened to you. Hopefully someone here can point you in the right direction to whom you can talk to. Gentle hugs.
Jessie
Who can point me in the right direction?? It's okay. I'm feeling terribly embarrassed. When I was an advocate against violence against women I never treated my clients like that. When the lady at MS Society was first rude I figured she was having a bad day. Then after that I just knew she hated me or her job. It just crushed me because I was counting on that help. Thankfully I have been calling resources everyday I can!!!
WAshingtongirl do you have some resources to help doveflyfree ?
Try calling MSAA they are more willing to help , and everyone there has always been nice and helpful whether it copay assistance or whatever you might need.
Seems rude to be treated that way 😡 I would call and ask for a supervisor and let them know 😡 We have enough problems then to deal with that. They have always treated me well, even when out of money . This does not sound right 🤷🏼♂️Ken
I know!!! I sent the MS Society Caseworker a email that I was sorry for bothering her and I'm sorry I have MS. I told her that I won't bother you anymore. I'm embarrassed and feel really bad for asking for help. I will send a letter to someone over their heads when I'm not sooo upset. This is not how my life was supposed to be. Now I just feel worse.
doveflyfree Are you dealing with the local chapter? If so, maybe you could deal with the regional number or the overall MS Society number. I'd think that eventually you would find someone nice to help you.
Thank you very very very much!!! I will try to contact them at that level. It's just already hard asking for help. Thank you very very much!!!
doveflyfree Not sure what you are looking for, but the SS disability attorney that I am using had a listing of the many available local services from food banks to churches, that had free clothing closets. Also, I think that MSAA has a program called MS Navigators that can point you to local services. Jesmcd2 or CalfeeChick may be able to steer you to the MSAA services.
I'm sure that it is hard for you to ask for help!
Thank you very very very much for caring and being supportive!!! I will check with the msaa and see if they can veer me in the right direction. Actually I found a place that will help me with a scooter and ramp and bars for my shower.
I used to help others with needs!!! I was going to be a counselor that helps people. I will still help people!!! Now I will help myself then I will help others with MS and resources. I sure know A LOT of them NOW!!!
Thank you for helping me sooo much!!!
Keep that in mind that I know A LOT of resources. I have been calling at least few weeks daily!!!
Hugs and kisses to you!!!
doveflyfree Maybe you could start a post with resourses that you have found. There may be someone tha can benefit from your research right now!
I will when I feel strong enough!! That's a great idea!! Thank you!!
I have been using MSAA for about 10 years they are wonderful and caring people also knowledgeable .
Thank you very very very much!! I will contact them Tuesday!!
I know the feeling believe you me when I say I don’t want MS to I am done with it. Ok got that off my chest. I would call back the MS society and let them know what happened maybe they will know what to do.
Good luck!!
Thank you very very very much for caring!!! I will try next week. Righ
Right now I need a break from calling. Thank you again!!
I do understand that sometimes you just need a break.
Ohhh yeah!!! We agree that MS is a yucky one!!! We have MS!! MS does NOT have us!!! I'm here for you!!
Yes, I recently (within last three weeks) have had personal experience with no follow through from them as well on their offered day (phone call). No follow up email with information, as offered on their part. I finally did send a follow up email expressing my concern for my helper, as it was my understanding that they, too, have MS and it had been over two weeks. (National and Local) No reply to that email via telephone or email.
I did ask a question to one additional group 2 1/2 weeks ago and still haven't heard back.
In my personal life experience, it is best simply to move on after a gentle follow up, or two.
The stress isn't helping us. 
Life is precious and short. (Although it can seem very long to us at times.) There are many other groups that are more personalized, and will follow through. Although, it's not always easy, and we must know it's not "us".
Believe it or not, I also had this horrific experience with 2 crisis centers. (And I have never been one to reach out- so this was extremely hard for me- hardest thing I have ever done in my life- and I am in my 40's.) Good thing I could hear Mama telling me to "Pick myself up by my bootstraps and move on".
There are people behind the words, phones, emails too- we never know what is going on in their world, how they were trained, if they were trained, what they went through that day, if the messages were ever sent, etc... It does help to look at the "big picture". Not to give excuses for them, but, to help us...
So, with love, faith, and self respect, we move on.
And look up.
He ALWAYS provides.
LOVE LOVE LOVE
Wow honey!! We have experienced the same thing!! We also feel the same way. I'm going to contact someone next year at the MS Society. I understand that the social workers are human and have problems too. I also know that it's their job to help us. Without us they don't have a job!!! I'm not rude in any way. Please don't take me the wrong way!! Just I will wait until the holidays are over. Then I am asking for a couple things I need help with. I don't like MS but I have to deal with it and need tools to have quality of life!!! You deserve that too!!! I need a scooter, ramp and bars for my shower. I don't know what you need but I have lots of resources for help. If you message me your needs I can guide you with getting help!!!
Thank you for helping me sooo much!!!
Hugs and kisses to you!!!
I'm praying for you!!!
This is just a link within the MS Community for everyone.
(Just in case you don't already have it.
msworld.org/multiple-sclero...
Thank you very very very much!!!!
I believe the msaa only accepts donations.
That’s all I ever hear from them.
Oh yes they immediately told me I don’t qualify for a cooling vest.
I would never donate to them.
Good luck to you.
Who said you can't get a cooling vest?? MS Society??
If you have MS there is no charge to the person with ms and if call and talk to them they are wonderful , if you chose the offer swim for ms but it is not required to receive assistance, It is done mostly with donation from people who chose to donate . The first thing I got from MSAA was a cooling vest at no charge to me.
When I applied I got turned down as soon as I put my income in
It is really my husbands income.
I never got any further than that.
Who said that?? MS Society??
MS is expensive!!!
Momjules Sorry to hear you feel that way and MSAA would like to help, if we can. We do have financial eligibility requirements for a few of our programs, including our Cooling program. The program is structured so that if someone is not able to get a free cooling vest based on the financial eligibility criteria, we will gladly connect them with the manufacturers we work with, who may be able to offer a discounted price.
In terms of our donation requests, that funding allows us to offer all of our programs free of charge to the MS community, including a Helpline, safety and mobility equipment, educational programs, MRI funding, resources such as our publications and videos, and other services. If you find that you would like more information or would like to speak with someone at MSAA directly, please feel free to send me a direct message here on our Community...or you can always call me here at MSAA! (800) 532-7667, ext. 106
- John, MSAA
I'm sure that isn't the goal or mission of the MS Society, to dishearten someone who calls for help. I would think someone higher up would want to know about your experience so they can correct the problem. Sorry you had to experience that.
I agree with you!! Thank you!! I will handle it Tuesday morning. It was sooo hard to even ask for help. I'm glad to hear not everyone has that experience!!
Hugs and kisses to you!!
It used to be, they have become to political and not as concerned about the clients well being.
Thank you for sharing, doveflyfree . Sorry to hear about your difficulties in finding assistance with other MS organizations. We would encourage you to reach out to our Client Services Specialists here at the Multiple Sclerosis Association of America (MSAA), who may be able to connect you with different resources for your needs. They can be reached by phone on our toll-free Helpline at (800) 532-7667, ext. 154, by email at MSquestions@mymsaa.org, or via our online MS Chat feature here:
Good luck!
- John, MSAA
Thank you very very very much!!! I will call Tuesday. Right now I am maxed out. My counselor said I am an open wound emotionally. To top it off I was already told I was going to get more help than I asked for then tells me to call lion's club and kiawanas club. What's up with that??? I was sooo upset. I NEED a break. Then I will move forward. I appreciate you giving me the msaa information. I wrote it down and will contact them. I really appreciate your guidance!! And thoughtfulness of responding to my post!! That was very nice of you!!
Sincerely thank you,
Shawn
Glad we can help and offer any outreach or assistance that we can, doveflyfree ! Take your much-needed break and continue with your outreach whenever you can. Just know that everyone here on this My MSAA Community forum is always willing to listen to your story and offer insight where needed 
- John, MSAA
Thank you very very very much!!!
Merry Christmas to you and your beautiful family and friends!!!
Thanks again!!!
doveflyfree , for over 30 years I've been aware that the MS Society doesn't seem to do much for individuals with MS who have special needs, though individual chapters of the MS Society differ. Chapters in some areas may offer quite a bit of help while other areas don't offer much at all. My impression is that the MSAA and the MS Foundation are both more oriented toward patient assistance programs than the MS Society. The rude treatment you experienced sounds very wrong to me, and I hope you will let the MS Society national headquarters know about it.
I will do that when the New Year is over. Right now I am exhausted!!! I'm devastated by MS Society and MS. I will tell you that A LOT of people are NOT happy about how MS Society treated me!!! A LOT more will find out too!!!
Thank you!!
Once again. All I get is requests for donations. Every day.
I know!! I was lied to about getting more help than I asked for!! There isn't much resources for us. I really needed help!! Still do!!
Thank you!!
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