can you feel cord lesions?

[illinwithoutacause]

hi,

i know this may sound like a weird question, but does anyone actually feel their spinal cord lesions?

i have inflammation on my anterior cervical cord and i have a lot of burning pain between my shoulder blades; i also have upper back and shoulder muscle pain on a pretty consistent basis.  another strange thing is that i experience tingling sensations up the back of my head on the left side when i squeeze water out of a sponge, cut something with a knife using my right arm, reach up with my right arm, and sometimes even when i laugh.  

when i spoke to my neuro about the latter sensations, he said they sounded "migrainous" which didn't make sense to me since i haven't ever had a migraine.

i just wanted to see if anyone else has had these kind of symptoms with cord lesions.

thanks in advance for any insight.

best wishes,
binx

[Camihija87]

He could be talking about Migraine Variant. I don't know all the medical jargon, but they are basically Migraines that you don't know you are always having.   They can manifest as a painful migraine, regular headaches, or even in weird pains and tinglings all over your body, hence the word variant.  It's even noted that lesions on the brain could be from migraines, so if anyone tries to tell you that you have MS just from a brain MRI, ask for a second opinion.  

[supermum_ms]

Hi and welcome, I don't know if you realise but the post you've responded too is from 2010, illinwithoutacause is no longer an active community member and it's very unlikely she will  see your response now.

You might like to know that MS can actually be diagnosed by just a brain MRI when the diagnostic evidence on the MRI is consistent with demyelinating lesions instead of the more common ischemic micro vascular lesions, and or the lesions are are in specific locations that meets the MS Mcdonald criteria. An all over the body symptom pattern wouldn't be consistent or suggestive of MS, all over is one of the red flags pointing away from neurological conditions like MS because of the way lesion damage works and presents...

Hope that helps.......JJ

[bbassel]

This is an old post but I just wanted to add something. I havve had intense upper back pain since two years before my diagnosis.

When asked for a mri three times I was denied. My doctor stated it was all muscular. Two years later I was diagnosed with ms. My ms specialist told me my upper back pain was due to spinal cord lesions and ordered an mri.

Sure enough I had many lesions in my spine. The pain was near the shoulder on my right side. Most of my problems are on my right side. The past six months or so I have had the same excruciating pain on my left side. Just wanted to comment on the thread as it hits home with me :)

Bard

[BrettR23]

I have had MS for 6 years or so now but who really knows for sure.  I have been having upper to middle back problems for a few weeks now.  My neurologist just told me that the thorassic MRI showed a lesion between T2 and T3.  I mean this could be a coincidence but I have literally done nothing different over the past couple months.  There has to be something that your body can feel around these things.

Brett

[illinwithoutacause]

thanks shell & jensequitur,

that's interesting to note your experiences since i have had pretty intense burning between my shoulder blades for months now.  i went for my brain & full spine MRI earlier today and the tech told me the doctor wanted extra images of my upper back.  my t-spine had never been scanned before so i'll be interested to see what shows up.

i was so bummed because they had me scheduled to have a 3T scan with contrast and then had to switch me to a 1.5T machine because i have a copper IUD.  the tech said that the 3T is really most critical for brain MRIs but the 1.5T machine is excellent at viewing spinal cord issues, so i decided to go for it instead of having my IUD taken out and rescheduling for a later date.  i hope that wasn't the wrong decision.

i'm a bit concerned since the last place i went to in february where i had the 3T brain MRI said the IUD wasn't a problem, but the tech at the academic hospital i went to today said it could burn my insides.  so now i'm thinking my uterus is fried on top of everything else.

some days i love being a woman more than others.

binx

[jensequitur]

I can feel the tingling at the level of one of my spine lesions - sometimes it buzzes all day long.  I also get cramps around that area in a line going around to the sternum.

[sllowe]

I feel you can feel the consequences of the lesions when you have inflammation around them, Especially when they are in the area of structural problems.

My biggest lesion is in my upper C area, and that is also the area where I get a herniated disc from time-to-time and I have spurring. So, it is possible that together, you "feel" it. One compounds the other.

When at my worst, when my area of demyelination was inflammed - you could see it in the MRIs, though the lesion was not active. Once this simmered, so did the pain.

So, it's not as weird a question as you think!

-Shell
p.s. I don't like how he said this sounded "migrainous" so doesn't.

[illinwithoutacause]

hi lulu,

thank you for your response--any reply is helpful in my book!  i am still undiagnosed, but my last c-spine MRI (w/o contrast) in late january revealed inflammation which the radiologist said was "possible myelitis," but suggested a repeat scan with gadolinium to make sure.  

i do have significant structural problems in my c-spine--a herniation at c5-c6 impinging the cord and a couple of bulging discs at surrounding levels.  i am actually going to have a full CNS MRI w/ contrast tomorrow afternoon which will hopefully tell us what the source of this "inflammation" is--MS lesion, cord trauma from the disc problems or another autoimmune disease.  it will be read by a neuro-radiologist, so i'm really hoping for some answers this time around.

i have had so many weird symptoms from all of this that i wanted to check and see if any of it sounded familiar to other members of the group.

thanks!
binx

[Lulu54]

HI Binx,  If I'm following this correctly, inflammation would be different than lesions.  Lesions are an erosion of the myelin.  

I'm wondering what kind of structural problem you may also have in your spine in addition to MS spots.

Sorry this isn't very helpful, my insight is shot for the night! LOL
Lulu