I'm back, a year later, still no answers! desperate!
Posted: Tue Apr 14, 2009 4:23 pm
Hi all,
I was on this forum about a year ago, scared to death i had ppms. well, after a clear brain mri last spring, i decided to try and take a breather from all of it. unfortunately, things haven't gotten better. in fact, they're way worse. A good number of you were so incredibly helpful and reassuring (shout outs to eyedoc, jimmylegs, notasperfectasyou, artifishual, g123, gwa, to name a few) i thought i'd come back! in fact, i just reread the posts/messages i received, and i already feel better!
to sort of go back to the beginning, two summers ago, there was something weird with my left arm. not weak necessarily, not tingly, but something felt weird, lower arm was stiff when i typed. i didnt notice it everyday, thought maybe i slept on it funny.
also, i noticed something "off" with my vision. not blurry, colors were fine, no eye pain, eye doc checked peripheral vision with some machine, optic nerve was "excellent" everything came back fine. couldn't figure out what was wrong with me. and not just one eye doc, i went to like 3 and none of them noticed anything wrong. still, i knew something was off. almost like my eyes couldn't focus or something. my anxiety went through the roof b/c i thought it could be horrible, something like a brain tumor. in fact, i believe i was so stressed that i gave myself a "non epileptic psyschogenic seizure." (google it, i know, i am officially crazy.)
eye problems (with the very occasional left arm weirdness) were my only problem for the first 5-6 months. then i started to get leg weakness, in my left leg specifically, and then both my legs, in the upper thighs. this is when i really started to freak. i had recently gone back to my optho and he agreed to get me an MRI of the brain. So, last may, i had a brain mri, w/ and w/o contrast and it came back clear. well, as far as my optho goes, that def. meant i didn't have ms.
it reassured me for all of ten minutes until i read that some ms only affects the optic nerves and spinal cord, hence the clear brain mri. well, i decided to take the summer off from investigating this mess, but went back in the fall after noticing what i'm sure is spasticity, specifically when walking the streets of DC in 95 degree heat and humidity.
this fall, i went back to my primary care physician, she ran all sorts of blood tests, all came back fine, negative on lyme (but i understand there is a general consensus those tests aren't always 100%, and i did spend most of my childhood summers on connecticutt and massachusetts, aka lyme central) and my b12 was 467, which i thought was interesting. Jimmylegs, if you're reading this, feel free to chime in! Clearly, its well above the 200 mark, but then i remember reading about how some drs think anything below 500/600 should be considered a deficiency.
by the time i saw her, my eyes were still somewhat bothering me, my legs were getting weaker, but i wasn't noticing the spasticity so much as the weather was cooling off. i also started getting weird leg pains, like not my muscles or nerves, but my bones hurt, like growing pains. one night when i was coming down with what felt like a little cold, my entire body, hurt so unbelievably bad i had to go to the ER at 2 in the morning. i tested negative for the flu, the ER doc was bewildered as to what was wrong, and after several doses of ibuprofen, she finally had to put me on percocet to get rid of the pain. i also started becoming sensitive to noise. oh, and occasionally i feel as though i can't completely empty my bladder, but thats rare. i also all of a sudden became somewhat lactose intolerant, and i noticed i was having problems wearing my contacts. anyway, my pcp saw my clear mri (i'm going to GW medical faculty so all my docs are in the same hospital, and they can all see my test results), and my normal test results (she dismissed my b12 as being perfectly normal) and tried to prescribe me an anti-anxiety med. i told her no.
well, from then, things have gotten progressively worse, so i finally got an appt with a neurologist at GW. but oh, did i mention, the day before my appt with the neurologist, his asst called and asked if we could push it back A MONTH b/c a "meeting" came up? I was almost in tears. i had been building this appt with him up for so long and now i had to drag it out another month??
fast forward another month (this march), and i finally got in to see him. he did a neurological exam, and i passed with "flying colors." he agreed to do a c-spine and t-spine mri w/ and w/o contrast, but he said the clear brain mri made him think i didn't have ms, and he wanted to check for anything structural. when i told him i was worried about PPMS b/c i read brain mris are frequently clear with ppms b/c it can only affects optic nerve and spinal cord, he replied with "my my, someone's been doing their research." if he only knew. Also, my cousin was recently diagnosed with chiari malformation, which can cause spasticity and eye problems. let me add, the spinal mri was the worst experience EVER. i knew i was somewhat claustrophobic from the brain mri, but ohhh myyy god this was bad, laying in that horrible machine for an HOUR AND A HALF not being able to move?? how do you people do it???
anyway, the nurse of my neurologist called me back to give me my results. this was it, i thought, something is going to come back, lesions, atrophy, something. well, it came black CLEAR. i was shocked. brad pitt could have called and proposed to me and i would have been less surprised than to hear this. she said everything checked out normal,no lesions, no atrophy, no weird white matter/ grey matter business going on.
so i'm going back to my neurologist soon to demand an LP and some VEPs. i feel i've been a bit too complacent with the dr's and haven't stood up to them enough, and i know he's going to object to those tests, but ill keep pushing. and if he says no, i'll got to another doc.
right now my vision is still slightly off (though oddly it hasn't gotten worse really from the beginning), my left leg/foot is somewhat weak, i have occasional spasticity (more so in right calf, i think b/c it seems as though im losing some muscles mass in my left leg), more when im stressed, i still have some bladder problems, my thighs are still weak although i can walk fine and good distances (1.8 miles around the tidal basin to see the dc cherry blossoms thank you very much), only occasionally does my left forearm bother me, usually if i lift weights at the gym my elbow starts to hurt, or when i type a lot (such as now) my fingers/hand feel still. still sensitive to noise, but the bone pain has mostly gone away, as has the lactose intolerance, weird, i know.
so basically, i still think i have ppms, but now with the beginnings of some Fibromyalgia from the stress of it (hence the bone pain and sensitivity to noise).
occasionally, though, on a particularly good day, i somehow manage to convince myself i don't have it. I think: ok, so, only 10-15% of people have PPMS, and of those, only 1-7% start with vision problems, AND I had a clear spinal MRI almost two years after all of this and i'm 23 years old and female. what are the odds?
basically, i want to know if you think i should pursue looking at any other diseases besides MS. also, since i didn't show any lesions on the spinal mri, do you think that just maybe, if i do have ppms, it might mean a slower disease progression?? and if the LP comes back clear, then what??would i def. not have MS then? and is it possible that my quick progression is not necessarily due to quickly progressing MS and that it's just my stress that is making it so much worse?
this is has been a horrible experience. i can't focus at work, when i'm really down i'll start crying and i can't eat, and whats worse is that after the clear spinal mri my family was so happy and relieved that i "didn't have MS" that I cannot imagine telling them, esp. my mom, that i still think something is seriously wrong with me. she worries about me, not so much about me having MS b/c if i do we'll "deal with it then" but about me being so upset about it. the worst part of it is, even after these horrible tests and the even worse anxiety, i will still probably end up being diagnosed with PPMS. It's like running a marathon only to end up coming up in last place. And, according to one website, because its already affected more than 3 of my FS, it appears as though i'm going to be one of the unlucky ones who progresses more quickly to an edss of 8. awesome.
anyway, thanks to those of you who actually made it through this! I know it was insanely long but i had to get it out to some people who might listen, as opposed to the doctors, and you people seem to be much more knowledgeable of this disease anyway! When i suggested to my pcp and her med student intern/helper that sometimes ms has clear brain mris, the med student/intern rolled his eyes at me and scoffed. arrogant prick.
anyway, i swear i'm not usually that unpleasant! on an average day i'm calm and cool and put 100% of myself into being strong and not let this, whatever "this" is, burden my loved ones. I guess it's just a bad day and i'm just really frustrated. any help/advice/suggestions would be greatly appreciated!!
I was on this forum about a year ago, scared to death i had ppms. well, after a clear brain mri last spring, i decided to try and take a breather from all of it. unfortunately, things haven't gotten better. in fact, they're way worse. A good number of you were so incredibly helpful and reassuring (shout outs to eyedoc, jimmylegs, notasperfectasyou, artifishual, g123, gwa, to name a few) i thought i'd come back! in fact, i just reread the posts/messages i received, and i already feel better!
to sort of go back to the beginning, two summers ago, there was something weird with my left arm. not weak necessarily, not tingly, but something felt weird, lower arm was stiff when i typed. i didnt notice it everyday, thought maybe i slept on it funny.
also, i noticed something "off" with my vision. not blurry, colors were fine, no eye pain, eye doc checked peripheral vision with some machine, optic nerve was "excellent" everything came back fine. couldn't figure out what was wrong with me. and not just one eye doc, i went to like 3 and none of them noticed anything wrong. still, i knew something was off. almost like my eyes couldn't focus or something. my anxiety went through the roof b/c i thought it could be horrible, something like a brain tumor. in fact, i believe i was so stressed that i gave myself a "non epileptic psyschogenic seizure." (google it, i know, i am officially crazy.)
eye problems (with the very occasional left arm weirdness) were my only problem for the first 5-6 months. then i started to get leg weakness, in my left leg specifically, and then both my legs, in the upper thighs. this is when i really started to freak. i had recently gone back to my optho and he agreed to get me an MRI of the brain. So, last may, i had a brain mri, w/ and w/o contrast and it came back clear. well, as far as my optho goes, that def. meant i didn't have ms.
it reassured me for all of ten minutes until i read that some ms only affects the optic nerves and spinal cord, hence the clear brain mri. well, i decided to take the summer off from investigating this mess, but went back in the fall after noticing what i'm sure is spasticity, specifically when walking the streets of DC in 95 degree heat and humidity.
this fall, i went back to my primary care physician, she ran all sorts of blood tests, all came back fine, negative on lyme (but i understand there is a general consensus those tests aren't always 100%, and i did spend most of my childhood summers on connecticutt and massachusetts, aka lyme central) and my b12 was 467, which i thought was interesting. Jimmylegs, if you're reading this, feel free to chime in! Clearly, its well above the 200 mark, but then i remember reading about how some drs think anything below 500/600 should be considered a deficiency.
by the time i saw her, my eyes were still somewhat bothering me, my legs were getting weaker, but i wasn't noticing the spasticity so much as the weather was cooling off. i also started getting weird leg pains, like not my muscles or nerves, but my bones hurt, like growing pains. one night when i was coming down with what felt like a little cold, my entire body, hurt so unbelievably bad i had to go to the ER at 2 in the morning. i tested negative for the flu, the ER doc was bewildered as to what was wrong, and after several doses of ibuprofen, she finally had to put me on percocet to get rid of the pain. i also started becoming sensitive to noise. oh, and occasionally i feel as though i can't completely empty my bladder, but thats rare. i also all of a sudden became somewhat lactose intolerant, and i noticed i was having problems wearing my contacts. anyway, my pcp saw my clear mri (i'm going to GW medical faculty so all my docs are in the same hospital, and they can all see my test results), and my normal test results (she dismissed my b12 as being perfectly normal) and tried to prescribe me an anti-anxiety med. i told her no.
well, from then, things have gotten progressively worse, so i finally got an appt with a neurologist at GW. but oh, did i mention, the day before my appt with the neurologist, his asst called and asked if we could push it back A MONTH b/c a "meeting" came up? I was almost in tears. i had been building this appt with him up for so long and now i had to drag it out another month??
fast forward another month (this march), and i finally got in to see him. he did a neurological exam, and i passed with "flying colors." he agreed to do a c-spine and t-spine mri w/ and w/o contrast, but he said the clear brain mri made him think i didn't have ms, and he wanted to check for anything structural. when i told him i was worried about PPMS b/c i read brain mris are frequently clear with ppms b/c it can only affects optic nerve and spinal cord, he replied with "my my, someone's been doing their research." if he only knew. Also, my cousin was recently diagnosed with chiari malformation, which can cause spasticity and eye problems. let me add, the spinal mri was the worst experience EVER. i knew i was somewhat claustrophobic from the brain mri, but ohhh myyy god this was bad, laying in that horrible machine for an HOUR AND A HALF not being able to move?? how do you people do it???
anyway, the nurse of my neurologist called me back to give me my results. this was it, i thought, something is going to come back, lesions, atrophy, something. well, it came black CLEAR. i was shocked. brad pitt could have called and proposed to me and i would have been less surprised than to hear this. she said everything checked out normal,no lesions, no atrophy, no weird white matter/ grey matter business going on.
so i'm going back to my neurologist soon to demand an LP and some VEPs. i feel i've been a bit too complacent with the dr's and haven't stood up to them enough, and i know he's going to object to those tests, but ill keep pushing. and if he says no, i'll got to another doc.
right now my vision is still slightly off (though oddly it hasn't gotten worse really from the beginning), my left leg/foot is somewhat weak, i have occasional spasticity (more so in right calf, i think b/c it seems as though im losing some muscles mass in my left leg), more when im stressed, i still have some bladder problems, my thighs are still weak although i can walk fine and good distances (1.8 miles around the tidal basin to see the dc cherry blossoms thank you very much), only occasionally does my left forearm bother me, usually if i lift weights at the gym my elbow starts to hurt, or when i type a lot (such as now) my fingers/hand feel still. still sensitive to noise, but the bone pain has mostly gone away, as has the lactose intolerance, weird, i know.
so basically, i still think i have ppms, but now with the beginnings of some Fibromyalgia from the stress of it (hence the bone pain and sensitivity to noise).
occasionally, though, on a particularly good day, i somehow manage to convince myself i don't have it. I think: ok, so, only 10-15% of people have PPMS, and of those, only 1-7% start with vision problems, AND I had a clear spinal MRI almost two years after all of this and i'm 23 years old and female. what are the odds?
basically, i want to know if you think i should pursue looking at any other diseases besides MS. also, since i didn't show any lesions on the spinal mri, do you think that just maybe, if i do have ppms, it might mean a slower disease progression?? and if the LP comes back clear, then what??would i def. not have MS then? and is it possible that my quick progression is not necessarily due to quickly progressing MS and that it's just my stress that is making it so much worse?
this is has been a horrible experience. i can't focus at work, when i'm really down i'll start crying and i can't eat, and whats worse is that after the clear spinal mri my family was so happy and relieved that i "didn't have MS" that I cannot imagine telling them, esp. my mom, that i still think something is seriously wrong with me. she worries about me, not so much about me having MS b/c if i do we'll "deal with it then" but about me being so upset about it. the worst part of it is, even after these horrible tests and the even worse anxiety, i will still probably end up being diagnosed with PPMS. It's like running a marathon only to end up coming up in last place. And, according to one website, because its already affected more than 3 of my FS, it appears as though i'm going to be one of the unlucky ones who progresses more quickly to an edss of 8. awesome.
anyway, thanks to those of you who actually made it through this! I know it was insanely long but i had to get it out to some people who might listen, as opposed to the doctors, and you people seem to be much more knowledgeable of this disease anyway! When i suggested to my pcp and her med student intern/helper that sometimes ms has clear brain mris, the med student/intern rolled his eyes at me and scoffed. arrogant prick.
anyway, i swear i'm not usually that unpleasant! on an average day i'm calm and cool and put 100% of myself into being strong and not let this, whatever "this" is, burden my loved ones. I guess it's just a bad day and i'm just really frustrated. any help/advice/suggestions would be greatly appreciated!!
