could this really be MS?

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hithisisme
New Member


Date Joined May 2017
Total Posts : 2
   Posted 5/31/2017 10:05 AM (GMT -7)   
Hi all. I am almost 40 years old, but in 2011 (can't believe it has been six years ago) I went to a neurologist after one side of my face went numb. I was prescribed prednisone but I was also sent for an MRI with the brain. The MRI revealed several "punctate foci" in the white matter and my neurologist was then convinced I had MS. He sent me for a lumbar puncture, and when the results came back, they were clean. I was sent for all kinds of other lab tests--Lyme, HIV, syphilis, you name it. Everything came back negative except for my B12, which was exceedingly low. Fast forward to October or so of 2016. My face still occasionally goes numb on one side and I do have occasional horizontal nystagmus (I usually get the nystagmus when I am tired or reading something very closely), but I always brushed that off as the results of low B12, but when my left thumb went totally and completely numb (it's fine now--the numbness only lasted a short while), I decided it was time to make another appointment with the neurologist. At the time, I was being treated again for low B12 (I receive monthly injections and also take an oral supplement). Anyway, I was sent for a sleep study (I am extremely fatigued all the time) and lab tests again to see about my B12 levels and my sleep study came up fine (they were thinking I might have sleep apnea, which would have caused my excessive sleepiness) and so did my B12.

Went back to the neurologist yesterday and told him about my most recent symptoms: the outside of my right leg goes completely numb from my hip to my ankle, and my left leg has done the same before, too (usually not both legs at the same time); another bout of facial numbness (it started as pins and needles on my scalp and then moved down the left side of my face--lasted about 30 minutes); numbness that comes and goes in shins; heavy "Jell-O"-like feeling in both legs after I had trouble sleeping one night; tightness in my right calf muscle that comes and goes; a completely numb right pinky finger (it's fine now); and TMJ that began on Saturday (hey, at least I'll lose a few pounds over this deal).

I told my neurologist (not the same neurologist I had back in 2011 but he is in the same practice) that I'd had a lumbar puncture years ago that came up clean, but he said that even a clean lumbar puncture wouldn't necessarily mean I don't have MS--he just said it's easier to diagnose MS with a positive lumbar puncture. Anyway, my neurologist is sending me back for another MRI (I had one in October that showed spots again, but only one very visible one and it is tiny) and for a daytime sleep test as well as for nerve testing (EMG). I have been going to the chiropractor thinking that the numbness in my legs and the tightness in my calf is caused by an issue in my lower back, but my neurologist seems to think that if the issue was due to sciatica that I would be in pain, and I'm not. However, I did have neck surgery about 10 years ago because of a severely herniated disc (C6/C7) and was told that it (the disc in my cervical spine) was a degenerative disc.

I realize that I will have to have more tests done (again) to rule out MS, but it sounds like the neurologist is now leaning in that direction (again--oy). I guess my question is whether or not the numbness in my legs sounds like it is caused by an issue with my lower back or with something that might be associated with MS?? MS just sounds kinda far out there, but my neurologist said that what I'm experiencing can't be related to low B12 because the last time my B12 was checked, it was fine.

Post Edited (hithisisme) : 5/31/2017 11:09:17 AM (GMT-6)


Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 228
   Posted 5/31/2017 10:57 AM (GMT -7)   
hithisisme said...

I guess my question is whether or not the numbness in my legs sounds like it is caused by an issue with my lower back or with something that might be associated with MS??


Back problems can cause neurological symptoms such as the numbness in your legs, as can MS. Is your Neurologist ordering a spine MRI? If not ask to have one. MS is a disease of the Central Nervous System(CNS) which includes the brain, optic nerves and spinal cord. MS lesions can show up anywhere within the CNS. The spine MRI could also answer the question about a back problem causing your symptoms.

Our nervous system is quite extensive. The EMG tests the nervous systems outside the CNS and is not used in the diagnosis of MS. If the EMG results come back with positive findings then that will rule out MS and point your Neurologist in a different direction.

There is no single test, by it's self, that can give a definitive diagnosis of MS. Lumbar Puncture(LP): 90-95 percent of those with MS have positive LPs (o-bands), some didn't have LPs or their LPs were negative.
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

hithisisme
New Member


Date Joined May 2017
Total Posts : 2
   Posted 5/31/2017 10:59 AM (GMT -7)   
Thank you!

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 228
   Posted 5/31/2017 11:09 AM (GMT -7)   
You're welcome smile
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