Starting treatment...before diagnosis?
Posted: Fri Dec 09, 2016 1:21 pm
Hey there everyone, thanks for reading. I'm a 28 year old female; I've been followed by a neurologist for almost 4 years now. I have NOT been officially diagnosed with MS, but I have had textbook symptoms and family history.
3 years ago I developed optic neuritis in one eye (likely postpartum, my first child was 8 weeks old) -- this is the ONLY diagnosable MS symptom I have had in almost 4 years (June 2013). Since this event I've had only two "episodes" of numbness/burning in both hands, and a heaviness of one leg. Both of these symptoms resolved on their own within 3-4 days and haven't returned. I've had 8 MRIs of my brain and 3 of my c-spine, all negative, with the exception of one "nonspecific" lesion of brain white matter. I have had a negative lumbar puncture. I also suffer from chronic migraines, which can also cause lesions on the brain. My neurologist always pressures me to begin drug therapy because "the sooner you begin, the better" but I'm afraid to take that on without any clinical evidence that the MS diagnosis is correct. In the doc's own words, "once you get on the MS train you can't get off." Meaning that for the next 40-60 years of my life, if I'm lucky, I'll be injecting or taking pills for a disease I may not have. By the doctors own admission, if I do have MS it may be so mild a case MRI scans aren't detecting it, and the "window is already closed" for early intervention by drug therapy (since I have had no symptoms that require medical treatment in almost 4 years)
Sorry that was long.....am I being stubborn or in denial by delaying treatment? I need concrete proof of such a serious diagnosis and so far, though I accept that it's a possibility in my future, I'm not buying it for now. I'd like to save myself a few years of drug treatments and their side ffects if at all possible. Any and all feedback is greatly appreciated. Stay well, everyone
3 years ago I developed optic neuritis in one eye (likely postpartum, my first child was 8 weeks old) -- this is the ONLY diagnosable MS symptom I have had in almost 4 years (June 2013). Since this event I've had only two "episodes" of numbness/burning in both hands, and a heaviness of one leg. Both of these symptoms resolved on their own within 3-4 days and haven't returned. I've had 8 MRIs of my brain and 3 of my c-spine, all negative, with the exception of one "nonspecific" lesion of brain white matter. I have had a negative lumbar puncture. I also suffer from chronic migraines, which can also cause lesions on the brain. My neurologist always pressures me to begin drug therapy because "the sooner you begin, the better" but I'm afraid to take that on without any clinical evidence that the MS diagnosis is correct. In the doc's own words, "once you get on the MS train you can't get off." Meaning that for the next 40-60 years of my life, if I'm lucky, I'll be injecting or taking pills for a disease I may not have. By the doctors own admission, if I do have MS it may be so mild a case MRI scans aren't detecting it, and the "window is already closed" for early intervention by drug therapy (since I have had no symptoms that require medical treatment in almost 4 years)
Sorry that was long.....am I being stubborn or in denial by delaying treatment? I need concrete proof of such a serious diagnosis and so far, though I accept that it's a possibility in my future, I'm not buying it for now. I'd like to save myself a few years of drug treatments and their side ffects if at all possible. Any and all feedback is greatly appreciated. Stay well, everyone