Our First "Ask Me Anything" - Here's the Recap!
On Tuesday, March 24th, MultipleSclerosis.net hosted our first Ask Me Anything (AMA) event on Facebook. This was hosted by our moderators and team in honor of MS Awareness month; the purpose was to provide a set time where members of our community could ask any questions they want, knowing there were a group of people on hand to either answer or direct them to helpful information and resources. The results were tremendous! The event prompted over 240 posts in all - including questions, comments, and replies - which averages out to about 4 posts per minute!
Questions included topics such as rights at work, discontent with current neurologist, and helping a relative with MS from afar. Other inquiries included what it means to be in remission, getting help with fatigue, what exactly is secondary progressive MS, and where to start if you think you have MS.
Our moderators and team provided responses springing from personal experience as well as the wealth of articles on MultipleSclerosis.net. If you are interested in the answers to the above topics, here are brief summaries of what was mentioned: (to see all the posts in their entirety, please visit the Facebook post here)
- Rights at work: the ADA requires an employer to provide assistive equipment/aids so you can continue doing your work. It prohibits the employer from firing you for being disabled, but does not protect you from termination if the employer cites other reasons. Also, do you have an HR department officer you can talk to? It's tough territory but it is important to understand your rights. Additionally, here's an article by one of our moderators, Cathy, about working with a disability. It has a lot of resources that are useful when looking for a job as well as if you are currently employed: https://multiplesclerosis.net/living-with-ms/help-for-the-disabled-looking-for-work/
- Discontent with current neurologist: You may be able to find an MS specialist near you by looking at the registry here. Or call the NMSS for a recommendation in your area. Additionally, attending patient meetings can be very helpful, plus a great source of information like names of good doctors.
- Helping a relative with MS from far away: You can be there for her when she wants to talk. You can learn about the disease and ask her how she's doing. Show an interest in how this is affecting her life. My brother also lives very far away and there isn't anything he can do physically to help me, but it does help mentally to know that he understands a bit of what I may be going through. I thank you on behalf of your sister for your caring heart.
- What it means to be in remission: Going into remission doesn’t necessarily mean that the symptoms disappear totally (some people will return to feeling exactly as they did before the exacerbation began). Here is a great 101 piece from Stephanie on understanding relapses.
- Getting help with fatigue: Believe it or not, one thing that might help with the fatigue is exercise - it stimulates all sorts of chemicals in the brain to make us feel better. Full time work, children and sleep deprivation is a bad combination for MSers. You might also check out meditation or yoga for its calming and healing effects.
- What is secondary progressive MS: Secondary progressive MS is one of the types of MS. Here is some info about SPMS that you may find helpful: https://multiplesclerosis.net/what-is-ms/secondary-progressive/.
- Where to start if you think you have MS: you begin with a request to see a neurologist- preferably one who specializes in MS - and have a complete workup of your history and an MRI. Good luck - it can take a long time to find answers.
We'd like to send an extra special thank you to everyone who participated for making this event the success that is was, as well as express how much we appreciate our expert moderators for their quick typing and helpful responses! We will keep the community updated on our next AMA or other events, and we do hope to see YOU there!
How many specialists did you see before finding "The One"?