today i was diagnosed with MS. i have 5 brain lesions (one that enhanced with contrast) and 5 spinal lesions (4 cervical and one thoracolumbar). the neuro said that clinically, i look pretty good with very few signs of MS, but that she is concerned with the number of lesions i have. she said that she is expecting a more benign progression because i present so well symptomatically, but that she can't be sure how the disease will progress. she also thinks that i may have had my first flare at 12 when i experienced a strange headache that eventually led to visual field cuts (i could only see parts of words on a page) and near blindness. this lasted for about half a day and then resolved. i had a similar episode at 25 but i just thought they were migraines.
so far the only testing that she has done is MRI's with and without contrast. she offered me a spinal tap and i asked about evoked potentials, but she said that neither test would really offer her any more definitive information. she said there is nothing else that she can think of that would cause me to have these lesions. while i am not necessarily doubting her dx, i just wonder what you guys think. is she being lazy about my dx? the MS society diagnosing criteria includes evoked potentials and lumbar puncture. she said that at any time if i wanted to do these tests that she would order them but felt they were unneccesary. should i get them anyways? or is brain and spinal lesions the smoking gun, so to speak for MS?
there was one lesion that is currently enhancing with the contrast in my brain. does that mean i am having a flare? or is that just something that happens all the time with MS? i have been reading up on steroid use for controlling the inflammation brought on by active lesions. should i ask about a round of steroids? or is it more based on symptoms since it just speeds up recovery and plays no part in how much demyelination occurs?
lastly, the doctor wants to begin me on medication and suggested copaxone. i would like to get some opinions as far as side effects go for what medications work for you all. copaxone seems to have very few side effects but it needs to be injected daily...i'm not really thrilled with that. plus, weight gain was also a side effect. over the last year i have had to basically stop all physical activity and its hard enough to keep myself from ballooning up, i am unsure if i want a medication that will make it even harder. also, i am in a grad program right now and i work part time as well. what medication causes the least amount of problems for you in regards to fatigue/brain fog/ sedation/ other issues that will make meeting these demands more difficult? avonex looks like another medication that i might like to try. how are the IM injections? are they really painful? also what side effects have you noticed with this medication?
thanks for your answers, everyone here has been so friendly and helpful. i just wish we didn't have to meet because of MS.
so far the only testing that she has done is MRI's with and without contrast. she offered me a spinal tap and i asked about evoked potentials, but she said that neither test would really offer her any more definitive information. she said there is nothing else that she can think of that would cause me to have these lesions. while i am not necessarily doubting her dx, i just wonder what you guys think. is she being lazy about my dx? the MS society diagnosing criteria includes evoked potentials and lumbar puncture. she said that at any time if i wanted to do these tests that she would order them but felt they were unneccesary. should i get them anyways? or is brain and spinal lesions the smoking gun, so to speak for MS?
there was one lesion that is currently enhancing with the contrast in my brain. does that mean i am having a flare? or is that just something that happens all the time with MS? i have been reading up on steroid use for controlling the inflammation brought on by active lesions. should i ask about a round of steroids? or is it more based on symptoms since it just speeds up recovery and plays no part in how much demyelination occurs?
lastly, the doctor wants to begin me on medication and suggested copaxone. i would like to get some opinions as far as side effects go for what medications work for you all. copaxone seems to have very few side effects but it needs to be injected daily...i'm not really thrilled with that. plus, weight gain was also a side effect. over the last year i have had to basically stop all physical activity and its hard enough to keep myself from ballooning up, i am unsure if i want a medication that will make it even harder. also, i am in a grad program right now and i work part time as well. what medication causes the least amount of problems for you in regards to fatigue/brain fog/ sedation/ other issues that will make meeting these demands more difficult? avonex looks like another medication that i might like to try. how are the IM injections? are they really painful? also what side effects have you noticed with this medication?
thanks for your answers, everyone here has been so friendly and helpful. i just wish we didn't have to meet because of MS.
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