Life with MS & EDS

October 27, 2009


Autumn is one of my two favorite seasons. I love the times of year when the world around me is in transition. I love the more temperate weather. I love the colors of the trees as well as the smells and tastes of fall foods. I love taking out sweaters, jeans, and jackets. I love spring, too, with it’s beautiful colors and emergence of life. I love being able to pack away those heavy clothes and dig out light weight clothing. I love that fresh produce is plentiful again. However, spring was always a bit less loved than autumn, because with spring comes tree pollen and tree pollen has always made me sick.

Unfortunately, autumn hasn’t been greeted with completely open arms anymore either. Since 2001, autumn has been a time when my optic neuritis flares up. My first attack was in October 2001. I now know that was probably my first MS relapse.

This October is kind of unique for me. The past 7 Octobers I spent expecting the optic neuritis to come along, but didn’t think much of it. After all, I had been told it wasn’t MS by a prominent doctor. It wasn’t until last year’s relapse that I even knew I had MS and that news didn’t come until closer to Thanksgiving.

I’ve been viewing this October as a test. Would my eyesight deteriorate at all this October, my first on Copaxone? When I started the shots, I always thought I’d have some indication of whether they were working once October came.

Well, we’re almost at the end of October. My eyesight never did recover after last year’s optic neuritis attack, so perhaps this isn’t a perfect test of Copaxone. I always see through my right eye as if I am looking through a fingerprint on a glass. I do think the vision is slightly worse than it has been the rest of the year. Unlike last fall, I do not have any pain behind my eye and I can still roll my eyes at my girls without any pain. I suppose that’s a good sign. I am concerned that the vision is slightly decreased, that the eye just feels different, and that it is puffy. I’m not sure why it’s slightly larger than my other eye. My chiropractor is actually the one who noticed it today when he asked how I was doing. I see Dr. Specialist tomorrow and look forward to seeing what she has to say.

Tomorrow is when I get the results of my latest MRI, which was a couple of weeks ago. I opted for just the spine MRI in case I end up participating in that drug trial I mentioned a couple of posts ago. The spine is where almost all of my lesions are anyway, so this is the part that I am very anxious to find out about. Here’s a picture of my spine from the MRI images I got to take with me on CD. I’m not quite sure what I am looking at, but in comparing this to other “normal” spine images I was able to find online, there’s definitely a lot more white on my cord than it seems there should be.

Spine October 2009

The amount of activity on my spine will be the clinical proof of how well or not well the Copaxone injections are working. If the activity level has remained the same or decreased, then I’ll have the Copaxone to thank and will be able to consider participating in the trial. If there’s activity, then we’re going to have to have a completely different drug talk and I’ll have to consider changing therapies. My fingers are crossed and I’m hoping for the best, but if you could send positive thoughts my way tomorrow afternoon, I’d greatly appreciate it! I’d ask you to send chocolate, too, but Posey already covered that part. (Thanks, Posey! The combo of dark chocolate and pear is extremely yummy!)

April 3, 2009

More than a bit surprised

Filed under: Uncategorized — by mseds @ 8:24 pm
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I finally got the CD of my brain and spine MRI in the mail today.  They sent the radiology report, too.  I honestly didn’t expect it to say much, so I was more than a bit surprised (shocked, perhaps) that it has a lengthy paragraph about the “multifocal lesions” in my spinal cord, including:

Posterior cord at C3

Right posterolateral cord at C3

Righter posterolateral cord at C4

Right cord at C4-5

Bilateral cord at C5

Anterial cord at C6

Left posterolateral cord at C7

It goes on to say that there are many in the thoracic cord, too:

Left cord at T2

Left cord at T3

Right cord at T6

Central and left cord at T7

Posterior cord at T9-10

Central cord at T10-11

Left cord at T11

Anterior cord at T12-L1

The C3 and T7 lesions have mild cord expansion and mild enhancement.  It goes on to say something I completely don’t understand, “the vertebral column and intervertebral disks are notable for a minor segmentation anomaly at C5-6 with a rudimentary disc, resulting in a straightened alignment.”  Huh???

Some of the cord lesions showed mild enhancement, which they say is suggestive of recent active demyelination.

I don’t think the brain part shows anything different, but I really can’t tell from the way it’s written.  One thing it doesn’t say is how large any of these white matter spots are.  I’m curious if the spots in my brain are any larger than they were before, but I guess I’ll just have to add that to my rapidly growing list of questions for Dr. Specialist on April 15th.

Knowing that I have all of these spots is kind of like a ticking time bomb, except that I don’t know the amount of time left on the clock or even if the bomb is worth worrying about.  It seems like these could cause problems at any time, or maybe not, and I won’t have any idea when the damage could occur or what damage would be inflicted.  Thankfully I have a lot to keep me busy between now and then.  This weekend we’re celebrating Big Sister’s 8th birthday!  Her family/friends party is tomorrow and she’s having her first sleepover with her friends the night before her actual birthday next week.  We’ll have Passover and Easter to keep us busy the rest of the week.  Hopefully the 15th will be here before I know it.  I will try not to fret too much about what all of the things in this report mean until then, but it’s hard not to worry.

I still thinking looking at the MRI images is pretty cool.  I have not gotten through too many of them.  There are well over a thousand on the CD.  Here are some of the ones that jumped out at me.  I have no idea what they show!  I’ll try to post more once I learn what I am looking at.

Here are a few of the pictures, mainly ones that I thought were just neat or funny looking.  If I find out more about what these are, I’ll let you know!



Squiggly Ears

Squiggly Ears

Spine showing organs

Spine showing organs

T2 Axial

T2 Axial

Another view of T2 Axial

Another view of T2 Axial

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