New in KC
Posted: Sun May 27, 2012 11:31 am
Hi all,
I've been lurking here for sometime but finally decided to post.
I was officially diagnosed in 2004 after I had about of optic neuritis and MRIs revealed brain lesions and other MS activity.
I largely ignored my disease for the next eight years because I saw no outward symptoms and it was so impossible to get an appointment with my neurologist. After a **severe** amount of stress at work and life difficulty this year I experienced an exacerbation beginning in March. I started to see a new neurologist but things have not gone well between us, ie she doesn't trust me to know my own body.
The slight tingling I felt in both hands progressed into paralysis of my left hand/arm. She treated with high dose (60mg) oral prednisone and did a VERY fast taper (reduce by 10mg every 2 days). As I came off the first round of steroids new symptoms started to appear but she refused to believe it was a new exacerbation because all the literature says that exacerbations must be separated by at least one month. MRIs less than 1 month apart revealed new brainstem lesions, at which point she put me on an even faster taper of prednisone.
My first exacerbation was localized to my cervical spine and this second flare is brain stem centered. I'm now numb from my right ear down to my right foot (the other attack was my left forearm/hand).
I'm at odds with my doctor because I feel she isn't listening to me when I call and say I'm experiencing brand new symptoms. Her office doesn't return my calls for 3-4 business days. Even then the doc refuses to believe it's new disease activity until she does a full round of tests, which only prolong my agony another week and I finally get steroids.
Is this common? I would appreciate a sanity check because I've lost mine through all this. I've got several appointments to see different neurologists in the next couple months. I feel I need to develop a good level of trust with my neurologist...one that doesn't avoid my calls for a week and refuse to believe the symptoms I report. How much of a working relationship does anybody else here have with their doctor? I'm hoping I'm not alone in wanting more responsiveness especially in times of crisis.
Jon,
28,
From KC, MO
I've been lurking here for sometime but finally decided to post.
I was officially diagnosed in 2004 after I had about of optic neuritis and MRIs revealed brain lesions and other MS activity.
I largely ignored my disease for the next eight years because I saw no outward symptoms and it was so impossible to get an appointment with my neurologist. After a **severe** amount of stress at work and life difficulty this year I experienced an exacerbation beginning in March. I started to see a new neurologist but things have not gone well between us, ie she doesn't trust me to know my own body.
The slight tingling I felt in both hands progressed into paralysis of my left hand/arm. She treated with high dose (60mg) oral prednisone and did a VERY fast taper (reduce by 10mg every 2 days). As I came off the first round of steroids new symptoms started to appear but she refused to believe it was a new exacerbation because all the literature says that exacerbations must be separated by at least one month. MRIs less than 1 month apart revealed new brainstem lesions, at which point she put me on an even faster taper of prednisone.
My first exacerbation was localized to my cervical spine and this second flare is brain stem centered. I'm now numb from my right ear down to my right foot (the other attack was my left forearm/hand).
I'm at odds with my doctor because I feel she isn't listening to me when I call and say I'm experiencing brand new symptoms. Her office doesn't return my calls for 3-4 business days. Even then the doc refuses to believe it's new disease activity until she does a full round of tests, which only prolong my agony another week and I finally get steroids.
Is this common? I would appreciate a sanity check because I've lost mine through all this. I've got several appointments to see different neurologists in the next couple months. I feel I need to develop a good level of trust with my neurologist...one that doesn't avoid my calls for a week and refuse to believe the symptoms I report. How much of a working relationship does anybody else here have with their doctor? I'm hoping I'm not alone in wanting more responsiveness especially in times of crisis.
Jon,
28,
From KC, MO