Life with MS & EDS

February 26, 2010

Mind Over Matter

Filed under: Uncategorized — by mseds @ 10:01 pm
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As you know, I’ve been less than happy with Dr. Generalist and dumped him a few months ago.  I tried a new generalist that Dr. Specialist recommended.  My husband and I met Dr. Generalist II about a week ago.

I brought with my giant folder with MRI films, CDs, lab reports, doctors notes, and other papers related to my diagnosis.  I think my Ehlers-Danlos letter is in there, too.  After talking with the gentleman for a while, it was time for the exam.  It was the standard, “walk down the hall and back, walk on your heels, walk on your toes, shut your eyes, put your arms out, and touch your nose.”  Okay, I’ve done this all before.  No problem.  I’m good at the drunkard tests.  Well, I used to be good at them.  This succession of task orders was quicker than in previous exams.  I’d like to blame the pace for my inability to find my nose!  I thought I did somewhat okay, thinking that I hit the bridge of my nose rather than the tip, but I was mistaken.  While the doctor left us alone for me to get changed after he checked my reflexes and sensation, my husband turns to me and says, “you know you missed your nose, right?”  I explained that I didn’t think I was that far off to which he responded, “the first time you hit your eye.”  Yea, whoops.  He was probably right.  At least I was able to laugh about it.

After I got dressed, we went back into Dr. Generalist II’s office to talk.  While I was getting changed he had time to review the contents of the giant folder.  We talked about my history and where to go from here.  I explained that the original Dr. Generalist felt like he was playing second fiddle to Dr. Specialist and that he didn’t know enough about MS, so it just wasn’t working out.  It was only slightly less awkward than trying to explain to a new significant other why you dumped your ex.

We got into a discussion of MRIs and if I should keep getting MRIs down at Penn.  While we were on the topic of MRIs, he commented that, “given these MRI results, I’m surprised you can walk without a cane.”  I’ve had a hard time getting that statement out of my head since he said it.  I asked if it was unusual.  I take it that it is not common because his response was, “it’s better that you look like you do than your MRI does.”

Somewhere during that discussion we also talked about my Vitamin D levels and I said that I have no idea what my level is, but without daily supplements, I get extremely fatigued.  He said that the 3,000 IU I take daily is probably a good amount, but that he’d like me to get my blood tested to see what my levels are so that we can adjust the daily amount if needed.  I need to get my 3 month Rebif blood work soon anyway, so I’ll do that at the same time.  I’m glad he suggested the test.

I also asked about CCSVI.  He said I was the third person that week to ask about it.  I confirmed his guess that there’s a lot of buzz online about it.  He confirmed my assumption that the neurology world just isn’t ready to get on board.  He did say that he read the research and that it’s usually the kind of thing he’d be suspicious of, but he respects the doctors at Buffalo and that he’s curious to see their research.  I told him that I applied for their study and the testing there.  I guess that’s still my only hope since no one around here is willing to do the testing.  The folks at Buffalo sent out a note today saying that over 500 people have already applied for the testing and that they hope to contact people soon.  They plan to start testing in March.  That was good to hear!

So, the guy seemed decent and knowledgeable enough that we decided that I’d see him twice a year, but keep seeing Dr. Specialist for the MRIs.  It’s better to keep with the same MRI machines and I’d like to keep seeing her.  I’d keep seeing her exclusively, but she thinks it’s important for me to have a more accessible doctor in case anything ever comes up.  I think this guy won me over when we were talking about my diagnosis process.  I explained that I’d have been diagnosed much sooner if the first neurologist would have checked my spine back in 2001 and his response was that it’s not the patient’s responsibility to have known that.  I liked his attitude.

Ever since finding out that I have a lot of lesions on my spine, I’ve always been curious why I have so few symptoms.  My optic neuritis in my right eye seems permanent and I fatigue without Vitamin D, but otherwise it’s easy to forget that I have MS (except for the Rebif shots, of course.)  Then I have a neurologist basically confirm that it’s pretty amazing that I’m as symptom-free as I am and it makes me wonder.  Some people say it’s luck, some have even said it’s because G’d is with me (not sure about that one), but I think it’s mind over matter.  I’m someone who can talk myself out of getting a cold and will myself not to puke when nauseous (except while pregnant), so is it that strange to think that it’s mind over matter that I walk as well as I do?  Mind over matter is pretty powerful and I need to stop second guessing it.  It’s just not an option to lose the ability to walk, so I plan to keep on walking.

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!)

October 10, 2009

Candidate for MS Drug Trial

Filed under: Uncategorized — by mseds @ 2:27 pm
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I was reading my local MS chapter’s monthly newsletter last week and a blurb about a MS drug trial caught my attention.  Dr. Specialist is one of the people involved in the research and it focuses on Copaxone.  It sounded interesting, so I called the research coordinator last week and it sounds like I’m potentially a good candidate for the study.

The study is based around the theory that MS symptoms decrease while pregnant.  No, I’m certainly not going to get pregnant again!  It’s a study that involves pairing Copaxone with either oral hormones or a placebo to see if relapses decrease.

After chatting with the point of contact I fit all of the things they are looking for, except there’s one problem.  I have a Mirena IUD.  I LOVE my Mirena!  It was inserted a little over 4 years ago and I have had very few periods since then and they’ve all been really light.  During my last OB-GYN visit we already discussed replacing it in March, which is about 6 months earlier than called for.  I don’t want to wait until the 5 year expiration date and find out that it doesn’t quite last that long.

So, here’s the problem.  The Mirena releases a hormone.  This would interfere with the study.  I certainly don’t want to get pregnant again, so I need to have some kind of birth control.  I refuse to use condoms.  They are fine when not married, but I was thrilled to get rid of them.  Going back on the pill isn’t an option either.  This leaves me investigating other alternatives.

I did a quick Google search, of course, and came upon another IUD, the ParaGard.  It’s a copper IUD and doesn’t have any hormones.  I know nothing about it beyond that, so I need to do some more research to see if that’s something I want to try.  I suppose there are other options out there to consider, too.

I was scheduled for my 6 month brain and spine MRI on Monday.  Since the study includes brain MRIs (which would save me my co-pay), I decided to only have my spine looked at this week.  That’s  where all of my activity is, so I’d like to know what’s going on there.  If there’s activity, then I may not get to stay on the Copaxone anyway and that would rule out the study.  While I’m down there I’m going to stop by to talk with Dr. Specialist to see what she thinks.  The point of contact is going to set me up with a time to talk with the OB-GYN that is part of this effort.

I think it’s interesting that they only look at the brain.  I know it’s more costly to do both brain and spine MRIs, but it seems that a study like this should look at both.  If I’d have had my spine checked earlier, I certainly would have had an MS diagnosis years earlier.  I can’t emphasize this enough — if you have MS symptoms, ensure to get both a brain and spine MRI!!  Just because the brain is clear or displays little activity doesn’t mean it’s not showing on the spine.

I’m looking forward to hearing what they all have to say.  I’m not usually one to go out on a limb to try things like this, but I love that I’d stay on Copaxone.  Most of the studies I read about recently involve getting some kind of placebo rather than a proven drug as the comparison.  Going without some kind of treatment at this point isn’t something I’m willing to consider.

Has anyone participated in any studies?  I’d love any stories or experiences you could share.

Also, if someone out there has a favorite non-hormonal birth control, I need some suggestions!

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

March 20, 2009

Two Hours in the Tube

Yesterday I went for my brain and spine MRI on the super-duper powerful MRI machine.  I was there way longer than I expected.  I knew it could take 2 hours in the MRI tube, but didn’t expect things to get started as late as they did.  I also wasn’t expecting to have to stay COMPLETELY still for 2 hours straight.  I thought there’d be chances to move a bit, at least when they gave me the contrast injection.  But, nope, had to stay still.

By about 45 minutes into it, my right hand was asleep.  The last two fingers were so asleep that they really hurt!  I tried to wiggle them, but what I really needed to do was give them a good shaking around.  That wasn’t an option, but I did get to move them enough while she was injecting the contrast that it wasn’t so bad during the second half.  Injecting the contrast seemed to be a bit more challenging than I expected.  I forgot that my arm was still bruised from getting all of that blood taken 2 weeks ago.  Now I have 2 nice bruises in the bend of my left arm.  I would have had her shoot it into my right arm if it was so darn asleep!  It’s a good thing I did pick the left arm because after she did the contrast she said to keep my arm bent for a few minutes.  I was so afraid of moving that I just kept it bent for the whole second half!  Thankfully it didn’t fall asleep like the other arm.

Oh, on a side note while I’m speaking of bruises, I am still black and blue from the last Copaxone thigh shots I did over 2 weeks ago!  I got to meet my new MS nurse this past weekend at a lecture she did.  She was great!  I talked with her afterwards and mentioned the bruising.  I definitely have more of a challenge with bruising than others because of the Ehlers-Danlos Syndrome.  The nurse asked if I tried doing the shots without the AutoJect since the spring action of it may be enough to bruise my fair skin.  Honestly, I’m too chicken to try it without the AutoJect.  I can’t imagine sticking the needle into myself on my own.  For now I’m just going to try to avoid places that are bruising that way, which thankfully means continuing to avoid my thighs.  I’m going to have an appointment with her next month for more shot training and to explore alternative shot areas that may work better for me.  In the meantime she did give me a good tip.  Sit down in a chair with your feet on the floor.  Anywhere you are not sitting on that doesn’t fall within the “bikini” area is fair game for a shot.  So instead of thighs, I’ve added upper tush to my rotation.  The tummy and arm shots are between the hip and tush shots, so I guess I’m spacing it out enough.  I have my shot rotation spots all mapped out so that there are 8 different spots for each tush and hip location.  With the exception of 1 week, all of the spots are quite far from each other, so I should be in good shape.  Also, I learned that I was doing my arm shots in the wrong place.  I was doing them where my arm rubbed against my side, so I need to go out further.  I did that last night and the shot hurt more to do, but hopefully the site reactions won’t be as bad.  Where I was doing them before I had red, very itchy spots for 6 days following the shot.  Benadryl spray only helped for so long.

Back to the MRI… The last time I got to listen to music, which made things go by pretty quickly, but the technician promised me that I’d hate the headphones by the end of the first hour and that it’s better just to take the ear plugs.  She was probably right about that part.

So, I got out of the tube around 5:20.  By then I knew I’d be heading out of the city at peak travel time.  That usually won’t matter, but this was a Thursday night and I’m a Brownie Troop leader.  Our meetings start at 6 p.m.  There was no way I’d make our meeting in time.  I quickly called my cookie manager and completely put her on the spot about taking over for me until I got there.  She was the only other person who had background clearance so that she could stay with the girls.  Thank goodness she was able to jump right in and I was only 30 min. late!  At least it has stopped raining by my drive home.  I really hate driving in the rain, especially when it’s kind of foggy.  It makes the vision out of my good eye look like my optic neuritis eye and that isn’t comforting!

I had hoped to spend my evening looking through MRI images, which sadly I love to do, but less than 200 of the over 1,000 images burned to the CD.  I was disappointed.  I called the hospital and they are going to mail me the CD and the radiology report.  I can’t wait to see what it says!  Hopefully I’ll be able to post more brain pictures and some spine images soon!

March 6, 2009

Seriously, this could still be something else?

Yesterday I finally got to see my new specialist!  She was great!  I am very glad that I found someone who knows more about MS than my general neuro.  She suggested that I’d be happier if I kept Dr. Generalist as my primary since he’s certainly easier to get in touch with for prescriptions, appointments, and things like that, but that I see her a couple times a year.

Then I started chatting with Dr. Specialist.  She asked why I was there.  I thought that was funny.  I told her I was diagnosed with MS back in November.  She asked about my symptoms, which so far only include optic neuritis and fatigue.  We talked about my first instance of optic neuritis after that flu shot in 2001 after Big Sister was born and about how it was in both eyes that year and that it’s only been in my right eye since.  I really cannot remember when my vision gets back to normal each time, but I imagine it takes several months and then I eventually notice the ON is back every October.  We also talked about the rest of my medical history, including the Ehlers-Danlos Syndrome.  She didn’t know much about EDS, but is going to do some research on that and see if there is anything I need to know about having both of these lovely things.

After talking, she took a look at my MRI images from 2003 and the CD-ROM from the MRI in November.  This was the first time I got someone to really explain the images.  She said that there were multiple lesions on the 2003 MRI!  She pointed out to me how the black part in the middle should look all black, but how that wasn’t the case in my images.  She explained what was different on the 2008 scan.  It showed a newer active lesion on the right part of the brain.  She looked for traces of it in the 2003 scan and said there may have been some minor bit, but she couldn’t get a good enough view from the images that were available.

Brain MRI Image showing white matter in the center

Brain MRI Image showing white matter in the center

After talking about the MRI images, Dr. Specialist did her exam.  I always have fun during neurology appointments.  The first thing we did was to go out into the hallway.  I got to walk back and forth, walk toe to heal in a straight line, hop on each foot (that was a new one), walk on my toes, and walk on my heals.  Then it was back into the room for more fun activities.  I got to do the other drunkard tests – touch my nose, then her finger, touch my nose which she moves her finger, touch her finger, etc. as well as the “how many fingers am I holding up” test.  I was able to easily read the bottom line of the eye chart card with my left eye and it wasn’t completely clear with my right, but I got a lot of them!  That was pretty good in my book and is an improvement from November!  She asked me to cover one eye and look at the red stitching on her lab coat (it’s smart of them to use red stitching for their names.)  It was a duller red than it was with my left eye.  It was like someone put a tint over it.

She also checked my resistance.  She had me put my arms out and she pushed to see how well I could resist.  She did the same things for my legs.  She used the neat hammer thing to check reflexes and sensation.  I was able to feel everything and apologized for almost kicking her when she ran the thing up the bottom of my foot.  She also kept flicking the top of my middle fingers, but I have no idea why!  I should have asked about that one.

I passed all of the fun tests with the exception of the red being dull and my optic nerve looking pale, so I guess it wasn’t quite passing with flying colors.  We talked a bit more after that.  I asked if it was unusual to only have optic neuritis and no other symptoms after 7 years with no treatment.  Her response seemed to indicate that it wasn’t completely out of the relm of typical, but it didn’t seem common.  Perhaps I am just fortunate.  But, given that optic neuritis is my only symptom, she wanted to do some blood tests to see what’s going on.  She also wants another brain MRI on a better machine to see if she can get better information on what is going on in my brain.  I’ve never had a spine MRI, so she ordered that, too.  I’ll get those done in a couple of weeks.

Before I left the hospital, I had to go to the outpatient lab.  I scribbled down what they were testing for:



Complete Metabolic Panel

Thyroid Stimulating Hormone

Blood Count w/ Diff

Anti-Nuclear Antibody

Sed Rate

AntiSSS, AntiSSB

Angiotension Converting Enzyme

Rheumatoid Factor

Lyme (they already tested for this, but she wanted it checked again)


This took 8 vials of blood!!!  That’s more than I’ve ever had taken at one time.  I’m known to pass out or at least black out while having blood taken, so I warned them ahead of time.  They gladly gave me some water and OJ, which was really nice of them.  Thank goodness the nurse was quick and was good at small-talk.

I thought the NMO IgG one was interesting.  She told me not to Google it, but of course I did anyway.  That one gets sent out to the Mayo Clinic for analysis.  It tests for Neuromyelitis Optical (NMO) which is also called Devic’s Disease. This disease also affects the myelin.  It can lead to a loss of myelin and can also damage nerve fibers and surrounding tissue.  While in the past it was thought to be a severe variation of MS, it is now known to be a separate disease.  In addition to causing optic neuritis, it can also lead to paralysis of arms and legs, cause sensory disturbances, and lead to bladder and bowel control issues.  Again, I don’t have any of the sensory problems and no bowel or bladder problems.  So, I have a feeling it’s not this.  Has anyone else been tested for NMO IgG?

I go to see Dr. Specialist again next month to see what she’s learned based on all of these tests.  I love seeing the brain images, so I can’t wait to see what the ones look like on the better machine.  What I’m not looking forward to seeing is the co-pay bill for all of this!  I bet I wipe out the healthcare FSA by June at this rate.  At least I’m lucky enough to have one of those.

In the meantime, she said to keep on the Copaxone.  She said I can take thighs out of the rotation and do other areas more frequently, but that makes me nervous.  I’m going to call her nurse for more ideas.  She also said I can do the upper part of my tush, as long as it’s not a part I sit on.  That was good to know.

I’m very happy that I found this dr.  My husband and I both really liked her.

December 18, 2008

This is my brain…

Filed under: Uncategorized — by mseds @ 10:16 am
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This is my brain (Sagittal view):

Brain-sagittal view

This is my brain with white spots (3-plane loc view – whatever that means):

brain- with spots

This shows the larger white spot (I think) on the right side of my brain (Axial Flair view):

brain- axial view

I still don’t know if I am reading these things correctly, but I find it fascinating and want to learn more. I was trying to find photos of “normal” brains to compare mine against. My husband had an MRI two year ago and I thought it would be neat to compare what’s in our noggins, but his was on film, not CD (not sure why since they were doing CDs back then.) So, I searched around and found a site that explains Brain Anatomy. The pictures aren’t a one-to-one comparison, but it was interesting to see what the different parts of the brain are called.

Even with that, it only helped me understand the MRI report a little better. (Lisa’s comments a little while ago were more useful. Here are excerpts from the ’08 MRI report:

  • Discrete high signal intensity lesion in the right peritrigonal white matter measuring approx 1.7cm
  • Several discrete high signal intensity lesions specifically in the left frontal periventricular white matter, right frontal subcortical white matter, left parietal centrum semiovale and subtle high signal foci in the left frontal and right posterior parietal periventricular white matter.

If anyone can explain this in plain English or point me to a place that does, I’d greatly appreciate it! Next time I am at the neuro’s office I’m tempted to ask him to pull up the images in the CD. It’s kind of like looking at a baby’s ultrasound picture and having a nurse say, “oh, those are the kidneys” and you are staring at it and having no clue what you are looking at. At least then they have the image up and you are right there and they can point things out. Eventually you notice something that looks familiar, like an arm or a foot and it is so cool. Now I can look at other people’s ultrasound pictures and be able to recognize things. I’d like to get to that point with understanding brain MRIs and it doesn’t seem like you should have to go to med school to know what you are looking at in a picture. I want to understand what’s going on inside of my head. The MRI report was obviously written for a doctor, not a patient. They should provide plain-English details for the patient, too. Hopefully the doctor will take the time to show me some of this at the next visit.

Oh, the report does mention that this could be something else, but the Lyme test I had came back negative. So much for getting to blame this all on a tick!

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