4 ms·
I’m lucky to have lovely, smart person in my life who lives with MS. Thank you for sharing you story. You are by no means alone in this and your concerns are sh
by rancar2 4y ago
I’m lucky to have lovely, smart person in my life who lives with MS. Thank you for sharing you story. You are by no means alone in this and your concerns are shared by many others who live with MS. I will send you an email shortly, but for others with similar stories that read this in the future, I high recommend the local groups from the MS Society (https://www.nationalmssociety.org/Resources-Support/Find-Support/Join-a-Local-Support-Group https://www.nationalmssociety.org/Resources-Support/Find-Sup...), reaching out to a team member at the Elliot Lewis Center (https://elliotlewisms.com/multiple-sclerosis-care-team/ https://elliotlewisms.com/multiple-sclerosis-care-team/) even if you aren’t a patient along with following their materials on social media which provide Q&A on the latest case information and especially critical during the pandemic when information on MS-specific was limited/unknown, ensuring you are on a best-in-class treatment that meets your needs (which for many people in the US will be Ocrevus, https://www.ocrevus.com/ https://www.ocrevus.com/), given the level of impairment you may qualify for state and federal programs in the US so call the SSA at 1-800-772-1213 (https://www.nationalmssociety.org/Living-Well-With-MS/Work-and-Home/Insurance-and-Financial-Information/Social-Security-Disability/Social-Security-Disability-Insurance https://www.nationalmssociety.org/Living-Well-With-MS/Work-a...) to ensure you know what you need to do to ensure you are always supported financially in your journey, and if you are still physically active, I’d also suggest the free trips for MS patients with First Descents (https://firstdescents.org/programs/programs-application/ https://firstdescents.org/programs/programs-application/).
There are a lot of resources in the US, but it’s hard to do it all alone. Unless you know someone who has been through it, it’s hard to navigate so try to get an MS Navigator assigned from the MS Society as well, which is completely free. You can call M-F 9am-7pm ET at 1-800-344-4867.
I hope this helps others living with MS.
- mush_room 4y agoI'm not in the US but I hope your post helps someone, appreciate it. Would you mind sharing your wife's experience with Ocrevus? I hear it's available where I live as well, but reflexively searching for side-effects some people don't do well at all with it. But I would like to hear how it benefited her if you will. Thank you.