Here is my story:
I have a positive MRI for MS--my neuro told me he thought I had multiple sclerosis after reviewing the MRI with me--but he wanted to order a lumbar puncture for more data.
It (my lp) came back negative.
I have two lesions in the periventricular white matter--which is textbook ms.
My doctor left the country and will not be back for weeks. His nurse called to tell me that my lp was negative--but did not tell me whether he was calling it MS or not.
She said that my doc told her to tell me to make an appt to see him when he got back. Here is my history:
Background:
I was dx'ed with lupus in 2005. I would be in the sun and get slayed for days--and get pleurisy, rashes, the whole nine yards. Lucky for me my lupus has not been severe.
I live near Yellowstone in Wyoming.
I think the reason my neuro is not considering the SLE is because my lupus labs are very good--my disease activity has been low. My rhuemy referred me to the neuro (and a cardio as I had tachycardia) and he also tested me for hyperthyroidism--which came back totally normal. My cardiologist said the tachycardia had resolved itself and my heart was fine.
Background: I started getting sick in March. I remember noticing a huge twitch in my arm but I just thought "eh, I am stressed, no big deal."
The spasms and twitches got worse. I chalked a lot of this up to some changes at work that were causing me some stress--Actually, I was in a meeting at work when I had to ask to be excused, as the room felt as if it were 110 degrees. I was DYING. A colleague later joked that I must be going through the "change of life" as I looked as if I was having a hot flash. Still, I did not put two and two together. I just thought it was hot...
I also started seeing flashing lights. My GP said I was having ocular migraines (which confused me as I never have migraines) and she said that was the best explanation for the visual disturbances I was experiencing.
I also started having tingling and numbness in my feet--and sometimes total numbness in my left index finger. My right hand has poor dexterity as of late and I wonder if that might be m.s related too?
Anyway, I soldiered on, wanting to get through the school year without scheduling appointments to figure out what was going on. I have to drive to MT to see my specialists, so it is hard to take time off.
My twitches were hard to ignore. I did google them and briefly became convinced I had ALS.
I finally saw my rhuemy who referred me to my current neuro.
He ran several tests. My initial Lyme test came back positive, but a second, more in depth test was negative. ? Strange.
My physical exam was normal, except for some balance issues.
My MRI suggests MS given my symptoms. (I also have back pain for the first time in my life--severe, awful lower back pain. I wonder--have any of you had m.s related back issues? Is that a symptom? I kind of chalk it up to having a 14 month old but I wonder...)
I also have black spots in my vision and a hard time walking.
In your opinion--do you think I might get a diagnosis or will I be in limbo because of my lp? I am so frustrated and distraught at the thought of having MS--but the thought that I might not get dx'ed is worse. I meet the criteria, or so I think: two lesions and two attacks....but I know it is not that simple.
THANKS for taking the time to read this.
I have a positive MRI for MS--my neuro told me he thought I had multiple sclerosis after reviewing the MRI with me--but he wanted to order a lumbar puncture for more data.
It (my lp) came back negative.
I have two lesions in the periventricular white matter--which is textbook ms.
My doctor left the country and will not be back for weeks. His nurse called to tell me that my lp was negative--but did not tell me whether he was calling it MS or not.
She said that my doc told her to tell me to make an appt to see him when he got back. Here is my history:
Background:
I was dx'ed with lupus in 2005. I would be in the sun and get slayed for days--and get pleurisy, rashes, the whole nine yards. Lucky for me my lupus has not been severe.
I live near Yellowstone in Wyoming.
I think the reason my neuro is not considering the SLE is because my lupus labs are very good--my disease activity has been low. My rhuemy referred me to the neuro (and a cardio as I had tachycardia) and he also tested me for hyperthyroidism--which came back totally normal. My cardiologist said the tachycardia had resolved itself and my heart was fine.
Background: I started getting sick in March. I remember noticing a huge twitch in my arm but I just thought "eh, I am stressed, no big deal."
The spasms and twitches got worse. I chalked a lot of this up to some changes at work that were causing me some stress--Actually, I was in a meeting at work when I had to ask to be excused, as the room felt as if it were 110 degrees. I was DYING. A colleague later joked that I must be going through the "change of life" as I looked as if I was having a hot flash. Still, I did not put two and two together. I just thought it was hot...
I also started seeing flashing lights. My GP said I was having ocular migraines (which confused me as I never have migraines) and she said that was the best explanation for the visual disturbances I was experiencing.
I also started having tingling and numbness in my feet--and sometimes total numbness in my left index finger. My right hand has poor dexterity as of late and I wonder if that might be m.s related too?
Anyway, I soldiered on, wanting to get through the school year without scheduling appointments to figure out what was going on. I have to drive to MT to see my specialists, so it is hard to take time off.
My twitches were hard to ignore. I did google them and briefly became convinced I had ALS.
I finally saw my rhuemy who referred me to my current neuro.
He ran several tests. My initial Lyme test came back positive, but a second, more in depth test was negative. ? Strange.
My physical exam was normal, except for some balance issues.
My MRI suggests MS given my symptoms. (I also have back pain for the first time in my life--severe, awful lower back pain. I wonder--have any of you had m.s related back issues? Is that a symptom? I kind of chalk it up to having a 14 month old but I wonder...)
I also have black spots in my vision and a hard time walking.
In your opinion--do you think I might get a diagnosis or will I be in limbo because of my lp? I am so frustrated and distraught at the thought of having MS--but the thought that I might not get dx'ed is worse. I meet the criteria, or so I think: two lesions and two attacks....but I know it is not that simple.
THANKS for taking the time to read this.
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