My name is Amy. I am 28 and was recently diagnosed with MS . I came across your website while conducting one of my many searches to learn about MS and I want to share my experience with your readers. I believe that people who work within the industry like you can learn from people just like me.I am a 28 year old, single, professional woman. Last year when I started to have problems with my vision I was diagnosed with optic neuritis but I still didn’t feel like myself. I had to go back to my doctor a number of times and request a referral to a neurologist. After a spinal tap it was confirmed that I had MS.
My first reaction when I got home was to go online and learn as much as I could about MS. I mostly wanted to know what to expect, my treatment choices and how I could live with MS.
I spent countless hours online reading information that was probably best written for medical students. I even purchased an online medical dictionary so I could understand some of the complex terms used within websites.
I went to all the top health websites like Yahoo health and Web MD but found that they only provided part of my informational needs. I even thought about going to Patients Like Me but I am not comfortable having my personal information shared with drug companies when I just want to hear from others like me.
I only went to some drug company websites when my doctor talked about certain drugs but those sites didn’t really speak to me as a person. I understand that they are limited in what they can say but surely they can do a better job of communicating with me as a real person.
To date my treatment options have been limited to steroids because I am afraid of other prescription drug treatments. I did go on Twitter and read others experiences with some available treatments but I am frightened of their side effects.
What was really missing, for me was advice on how a single woman, who hopes one day to get married and have a family, can live with MS. I mean, if I get serious with a steady boyfriend how and when do I let him know I have MS? Can I have a normal sex life with MS?
I really wanted an app for my iPhone so I could track my MS symptoms. I thought an app like this would be handy to let me know when it might be time to see my doctor or go through another round of IV steroids but I haven’t found one yet that really helps me manage my MS.
I like the idea that you communicate within your site to put patients first but I would also cast a vote for content that talks to me as a real person and addresses my concerns. Talk to me like you talk to a family member don’t spew generalized and generic health information because I can get that on Wikipedia.
I am an MS patient and I want to be heard but I also want to know that the medical community cares about me because right now I feel lost in a system that treats patients not people.