February 12, 2013
Share your experience with possible MS diagnosis. Get the conversation started.
July 10, 2013
I am in limbo...and that's where I have been for the last 17 months. I was initially diagnosed with CIS in February 2012 at 33 about one week after I woke up and couldn't see well out of my left eye. I initially thought it was exhaustion - maybe it was the late nights while writing my dissertation? Maybe it was an eye infection from those eyelash extensions I had over the holidays - they looked so good! Maybe it was something else?
I went to work and school and tried to ignore it. But having reduced vision made me feel dizzy and disoriented. I just didn’t feel “right” and it was really distracting. As a student in a healthcare profession, I knew the importance of preventative healthcare – but it took me until day 7 to finally see my doctor. The thought of it being unilateral crossed my mind as a concern. I worried of what it might be. At the appointment, I told my doctor that I couldn't afford an MRI, which of course I had to have. I was really scared.
I went for so many appointments that week, including the MRI. A resident called me on a Saturday night with the news that I had two brain lesions and optic neuritis. I felt like the floor fell out from under me. But she was very reassuring and took the time to talk me through the diagnosis.
I spent the rest of the weekend researching as much as I could online - in between crying spells with my roommate and my boyfriend (now husband). I tried to ignore regular websites (since they were scary!). In my training I was told to tell patients to be cautious of what they might see online about their diagnosis. It was hard for me to follow my own advice and not rely on the internet too much. I found research studies describing the effectiveness of the use of DMTs. I learned about options from the research, and through numerous appointments and phone calls with my doctor and neurologist. Everyone was so helpful in answering my questions. It felt weird to be on the other side of the healthcare system.
As a student, I applied for financial aid through the hospital - which was extremely helpful in allowing me to pay for the earlier bills. I found that a combination of learning about MS and advocating for my own care helped me to come to terms with having CIS. Talking to my close friends and family about it also made me feel better. I'd like to think that maybe having this experience has made me a better healthcare provider too, since now I have a slight understanding of what some of my patients experience.
Currently, I am on Avonex, hoping that the disease doesn't progress too soon. The side effects of Avonex are not so nice, but every time I do an injection I tell myself that I'm doing this to stay well and be strong. I feel lucky to be able to have this medication as (perhaps) a “preventative” measure. I have learned a lot this year, and I think it has made me a stronger and more understanding person. I think for now I am happy with being in limbo.
September 10, 2013
I am not sure what is wrong with me. I have numbness in my hands feet and face. I have severe lower to middle back pain that is constant and double vision. My doctor is befuddled and does not know what to do next to identify what is causing it. I stubmled upon this site and I have a lot of the symptoms of MS. My wife notices more that I do, she says I am having a harder time concentrating on things and my speech is different. She also noticed I am stumbling more often. I saw a neurologist and had a full body EMG. He said the EMG was normal. What do I do next?
September 10, 2013
I can only imagine how hard it must be to not know what is happening. It sounds like you are dealing with a lot right now. Is there a way you can do more testing and/or see a different neurologist for a second opinion? I think the only thing you can do is keep seeing your doctor and continue to describe what you are experiencing (even if you think different symptoms might not be related) and keep asking questions until you get some definite answers. Good luck and hang in there!
September 10, 2013
Thank you for replying. what sort of tests should I ask for and what questions should I ask?