Sharing the truth about life with MS
*This survey is now closed. Thank you to everyone that participated.* It's been said that you can't understand MS if you don't have MS. While that is true, we can also share information about what it's like to try and help others understand a little bit about what life with MS is like.
That's what our MS In America survey does. It asks questions like what symptoms you experience, what medications you've tried and if you liked them or not, the mental and emotional side of MS, and so much more.
Please consider taking our short MS In America survey to share your experience so that we can help educate others and bring more awareness to Multiple Sclerosis. Thank you!!
Hi, Danny here. I have a reply regarding the discussion or question about: life with MS. I have had MS for a while, diagnosed in 2017 but, began symptoms around 2008 which progressed to disability in 2018. Here is what I have to say, to start: I hate having MS so much that there is no way I can describe without using bad words. I have dedicated the last five years to learn all I can. With this knowledge, I have made great improvements but, I still hate it and other “Boomer” diseases. My understanding about autoimmune diseases have surpassed many MDs and I continue to learn, if I am not so fatigued that I evaporate a whole day or week. I find that my access to… well, to most things are nil. ADA supports do not exist, mostly, and I am shut out of so many things. I have learned that Medicare completely sucks. I have learned that I have to pay out of pocket for most of the care, therapies and doctors because, Medicare sucks so much. I am going broke but, my personal choices for medical/therapeutic services have worked well to decrease symptoms: mobility, fatigue, cognitive, psychological and overall health, (which is outstanding), despite the limited access that Medicare allows to better ones health. If anyone out there wants to know how I increased 20 to 25 percent of reduction of symptoms effecting mobility, cognitive issues, fatigue issues and better biological health, please ask me.
Hi
. Welcome to the community! It really is a shame that you have to go broke getting the medical treatment help you need in this country. Medicare is changing, but many of those changes will probably not help people who are on Medicare right now. We need better a better healthcare systems, for sure. I am certain many people would love to hear how you reduced your symptoms as long as it doesn't involve linking to any particular product or advertisement, or direct medical advice. We encourage people to share what helped them without telling people what they should do, if that makes sense. That is for your safety and theirs since we are not medical experts. Our Stories section is a wonderful place to share that kind of information. Here is a link: https://multiplesclerosis.net/stories. You are far from alone in your hatred for MS and you are more than welcome to express that honestly here. It takes so much away that it is hard not to harbor those kinds of feelings. I am glad you found us. You will find lots of support here from people who understand. Best wishes. - Lori (Team Member)
Danny, I'm going to keep this short. I applied for SSDI and received it on June 2018
You mentioned Insurance and I agree, Medicare sucks.
I don't know your financial status.
As my secondary, I have Medicaid which has been a blessing. It picks up everything that Medicare doesn't.
Every state is different concerning it's requirements. Go online and find your towns/cities service center. Please go into and talk with a representative and they will go over everything required to apply. As I mentioned each state is different and the time frame for an answer varies. God bless on your journey.
