10 posts tagged “MS community”

“Not in this fight alone.” An interview with multiple sclerosis patient Monica

Posted May 16th, 2013 by

Say ‘hello’ to Monica. Some of you may know her on PatientsLikeMe as msajstall. She was diagnosed with multiple sclerosis (MS) back in 2005 and has been a member of the PatientsLikeMe community for 6 years now. She recently took some time to talk with us about her diagnosis, finding the right healthcare coverage and the importance of connecting with others.

Monica

When were you diagnosed with MS and what changes did you have to make in your daily life?
I was diagnosed in January 2005 after numerous complaints about not being able to feel my legs. I noticed the sensation changes primarily when I walked up stairs. I also noticed that I had lost sensation when I used the bathroom. That particularly scared me, so I went to the hospital and stayed there for 5 days. That’s when the doctors came in and gave me the diagnosis.

I was actually very scared of the diagnosis and I didn’t know much about MS at the time. The doctor did tell me that I would be in the hospital about 5 days more before he would discharge me. At that time, I was not working but I was searching for employment. After finding out, I researched MS along with continuing my job search. After discharge, I noticed how much information was available online dealing with MS and it overtook my job searching.

After you decided to stop working, what challenges did you face continuing your healthcare coverage?
I did not decide to stop working until 2 years after the diagnosis. I decided to get approved for disability through the Social Security Administration prior to leaving the workforce. My neurologist was my number one advocate. Once I applied and the process started, I got approved in 82 days. To me, that seemed like confirmation that I made the right decision. Although I didn’t have long to wait to be approved, it did not make it better for me to accept that Medicare would be my healthcare coverage from age 35 on out. The system was not created to care for 35 year olds and I knew there would be challenges. And boy was that a TRUE thought.

How has an online community like PatientsLikeMe helped you along the way?
PatientsLikeMe has helped me tremendously. When I was diagnosed, the MS community was much smaller than it is today. The forums always seem to really help me. If I have a question, it most likely has already been asked on PatientsLikeMe. I can truly say when I decided to change my disease-modifying drug, there was a whole forum talking about the drug and it really convinced me.

What is one thing you think every MS patients should know?
MS patients must realize that they are not in this fight alone. Besides predominate non-profit organizations dedicated to MS (National Multiple Sclerosis Society, Multiple Sclerosis Foundation, and Multiple Sclerosis Association) there are so many self-help groups that help with things. PatientsLikeMe gives us a voice that can help us to face our problems. PatientsLikeMe makes us feel that we are being heard. I truly appreciate the moderators of the forums and PatientsLikeMe as a whole.


What Part of MS Are You Most Afraid of?

Posted August 8th, 2012 by

Can facing your fears help you come to terms with them?

That’s the idea behind a recent discussion in our multiple sclerosis (MS) forum, in which one member asked, “What part of MS are you most afraid of?”  The answers poured in from dozens of MS members who found it cathartic to reveal their true fears.  In some cases, these heavy concerns are things that members have not felt comfortable sharing with family or friends.  For example, some stated that they are most scared of “relying on others” or “becoming a burden.”  For others, it’s “not recognizing myself” or “having no quality of life.”

Check out some of the other answers in the word cloud below.

A Word Cloud of One-Word Answers to "What Part of MS Are You Most Afraid of?"

Are there fears about your illness that you haven’t shared?   Find solace and solidarity by talking to other patients like you today.  You may find that bringing your fears out into the light makes them seem smaller.  Or you may learn that many others are dealing with the exact same worries.  Discover the benefits of “letting it out in the open” amongst a supportive community who can truly relate.