One thing I have learned while being on this crazy journey has been to be my own advocate, nobody else is going to do it for me! In the beginning with my diagnosis everything was so huge and seemed like a life or death decision with each appointment. Hanging on every word from each new doctor was stressful, so I took my first step and reached out to a friend with MS.
We talked on the phone for hours and by the time the conversation was over I was feeling a little more at ease with my new diagnosis and had some options! After talking to my friend the first thing I did was contact a neurologist with an MS specialty, this helped immensely. Being in the right place will help you in the long run. So now I was hooked up with an MS Neurologist and the practice even had an MRI machine and a lab all in one place! Together with my new Neuro we made the choice for what drug I would be starting out on, turns out it wasn’t right for me but it was a start. When I thought the drug wasn’t working I had to bring it up to my Doctor, have a voice and discuss treatments with them. If I had never spoken up would I still be on that med, hating everything, with the flu six days a week? If you don’t like what’s going on with your body change it. Researching is something I love to do, now instead of baseball history I’m looking into the newest MS treatments, trials and events in the area. http://www.healthcarejourney.com/news--events.html Follow this link to get you started through it you will be able to sign up with the National MS Society and become a member of the MS community. You will be able to look into trials in your area or find support groups that may help you iron out some of your issues, or that may point you to the Doctor or facility that you have been looking for. All of this brilliant information can help you understand what is going on with MS but it is up to you to speak up and take hold of it. You have MS, it doesn’t have you! Thank You, Donn
2 Comments
Susan RN
11/2/2013 04:12:55 am
Very well said, Donn. I am 20 years with MS Diagnosis. The most important thing I have done with myself is find people who I can count on to be on my team. The best have been Neurologists who are specialized in MS, therapists, MS Society, and all the folks who have to navigate living with MS. I am the captain of this team and need to follow my instincts about people and treatments that are not right for me. Turns out for instance that my Hemi-facial Spasm did not require brain surgery 20 years ago and resolved on it's own. I am very fortunate to have ad great family support, but always prefer to do as much as I can for myself. I try to keep informed and so appreciate how much more info is available.
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Donn
11/12/2013 04:12:30 am
Susan,
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