Life with MS & EDS

March 31, 2009

Ch, ch, ch, ch, changes

I was just noticing how quickly time is flying by.  I was diagnosed with MS over 4 months ago.  It doesn’t seem like it’s been that long.  Although, many things have changed in that short amount of time and I caught myself paying more attention to those changes this past weekend.  I thought I’d jot some of them down.

Spontaneity – Well, that’s gone almost out the window.  It’s hard to be spontaneous, especially in the evening when I have to plan out at least a half hour for doing and then dealing with my shot.  With 5 min. for the heat pack, then the alcohol, then doing the shot, then icing or just dealing (depending on the location) until the stinging is gone, that’s easily 45 min.  Add fatigue on top of that and the little bit of time I have between putting the girls to bed and being ready for bed myself is drastically reduced.

Vision – While it’s certainly gotten better in that I don’t have pain anymore, it’s not back to 100% yet.  I’m beginning to think that there’s permanent damage to the optic nerve and that it won’t get back to 20/20.  Thankfully it’s only an annoyance and there’s not enough vision loss to be problematic, but I do worry about degradation in my vision as time progresses.

A Little Leaky – About two weeks ago I realized I was a little leaky.  I was frightened that this was a new symptom.  I know that incontinence isn’t uncommon, unfortunately.  I’ve been pretty lucky that optic neuritis and fatigue have been my only symptoms and I planned to keep it that way for the foreseeable future.  So, this was annoying in multiple ways.  Was it a new symptom or merely a UTI?  After a few days I finally took my temperature.  It was 100.2.  I wasn’t sure whether to call my neuro first or my primary dr.  I called the neuro, but it was Saturday and he wasn’t there.  So, I called my primary.  He prescribed 3 days worth of antibiotics and things did improve.  I’m still nervous that it’s the start of a new symptom though.

Black & Blue – Having Ehlers-Danlos (EDS), I bruise frequently and very easily.  I usually have no idea where my black and blue marks came from.  Now I know where many of my bruises come from – my shots!  The black and blue marks on my thighs are finally fading.  It’s been 4 weeks!  My newest black and blue mark was the result of last week’s arm shots.  The Shared Solutions folks call often to see how things are going.  I usually say fine, except for some black and blue marks and some itching.  They always ask about the depth settings and whether I’m using the AutoJect.  Honestly, I have a feeling neither matters.  This is just how my skin is.

Yoga – I tried a yoga class with a friend recently.  It was supposed to be a Level 1 class, but we quickly realized it was not a “beginner” class!  I miss the days of being able to easily do backbends, bridge-ups, head stands, etc.  Those always came so easily to me.  I was never athletic, but floor gymnastics was simple for me since I was so bendy.  Those days are gone though and while I still have a lot of hypermobility in my hands, ankles, hips, etc., many other parts just won’t cooperate as much as I’d like.

Choosing Clothing – I used to choose what to wear based on what I was doing that day, the weather, what color I was in the mood for, etc.  Now I choose it based on where my shot is that day or where it was the night before and where seams are on my various pairs of underwear and pants!

Time – My sense of time has changed a lot.  I keep out 5 shots worth of Copaxone at a time and it seems like it’s constantly time to refill my stash.  I wish work weeks flew by that quickly.

March 23, 2009

Copaxone Injection Sites

Filed under: Uncategorized — by mseds @ 3:12 pm
Tags: , , ,

UPDATE: Last night I went to do my injection and pulled up my graphic to check something.  That’s when I realized I made a mistake.  Sorry!!!  It makes more sense to have the hip part of the diagram above the buttocks part, so that it is ordered like ones body!  I flipped that part of the drawing around and corrected the rotation week where the shots are close together (that would be week #7.)  Please see the new chart below.


Wendy sent me a bunch of very useful images regarding Copaxone Injection sites.  (Thanks, Wendy!!)  I thought you may also find them useful.  Before I get to those, I’ve included the injection location diagram that I created for myself.  My goal was to minimize the times injections were given within one spot of each other.  I think it’s important to not only rotate shot locations, but also to spread out the places where shots are given within any particular location.  You’ll see that the only times I have shots next to each other are rotations 2 and 3 in the arms and the #7 spot rotations  for the hip and tush.  For rotation #7 for the hip and bottom, I’m very careful to make sure there’s distance between them.  This is when my easy bruising comes in handy because I just ask my husband to look at my butt to help me find a spot (here’s another time when that weirdness of MS comes into play and talking about my bottom is nowhere near sexual!)

Ivy's Copaxone Injection Rotations

Ivy's Copaxone Injection Rotations

Now here are the images Wendy shared:

Copaxone injection site schedule

Copaxone injection site schedule

Copaxone Injection Sites - Body Illustration

Copaxone Injection Sites - Body Illustration

Copaxone Iinjection Sites - Rotation Schedule

Copaxone Injection Sites - Rotation Schedule

And some useful reminders:

Copaxone - Useful Reminders

Copaxone - Useful Reminders

One reminder I’d add to this list is to try to stay further out than 3 inches from the butt-crack (I’m sure there’s a better way to say that, so pardon the phrase.)  It’s important to stay away from the nerves there.

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 13, 2009

Sesame Place Challenge

Filed under: Uncategorized — by mseds @ 7:24 am
Tags: , , ,

All year I look forward to the last Sunday in April.  This is the day that the Variety Club teams up with Sesame Place to open the park for free for kids with disabilities.  The day before they do the same thing for kids with Autism.  It’s called Variety’s Sesame Place Challenge.  It is such a great event!  We went to it two years ago for the first time.  That was the first summer Little Sister was walking.  It was wonderful to be in a place with other people who were going through similar experiences, although certainly to varying degrees.  I can’t wait to go again this year.  Little Sister has made a lot of progress since the first time we went.  I hope that she’ll try more than just Elmo’s Flyin’ Fish (very much like Dumbo) this year.  Rides are a challenge for her.  Being in loud, crowded places is also a challenge for her.  It’s nice to know that we’ll have the opportunity to be in an environment where I won’t feel the need to explain anything to anyone.  The other people there will understand why I get so emotional and excited about seeing an almost 5 year old get on a ride for the first time that usually brings on this kind of response from parents of a a 2 or 3 year old.  Most importantly, Little Sister will have the chance to feel proud.  They treat the kids great and they even get a nice surprise at the end to recognize their accomplishments.  Big Sister gets to enjoy the day, too.

I just registered us for this year’s event.  The last time we did this I had to register via mail, so it’s nice that it’s online now.  Even neater was that “Ehlers-Danlos Syndrome” was actually on their drop-down list of diagnoses!

Thank you Variety Club and Sesame Place for doing this!

If you are in the Philly area and have a child with developmental delays or disabilities, definitely check out this event!

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.

Blog at