Life with MS & EDS

April 15, 2009

Three Choices

Today was my follow-up appointment with Dr. Specialist.  My husband came with me again.  While in the waiting room it occurred to me that you see more couples together in specialists’ offices than you do at regular doctors’ appointments. I think that says a lot.

I had shot training with the nurse before the appointment.  I decided not to do my shot though because I was chicken to do it without being able to heat up the area.  She encouraged me to use spots I’ve not yet tried and some that I’ve been avoiding.  She said to use the outer thigh, more of my stomach area than I’ve been using, and showed me the right place to do my arms.  I need to put them over the back of a chair and use that area.  She asked me to try the thighs again, but I’m reluctant.  She encouraged my husband to do some of the shots, too.  Even though I can pretty easily read behind me (thanks again, EDS), it’s probably easier to just let him do those.  She saw that I was pushing in too hard with the AutoJect, so she showed us to cradle the injector in one hand before pushing in to release the safety with the other.  Also, it never occurred to me that I didn’t have to hold the button down once I pressed it.  She’s pretty sure I don’t have to, but I’ll find out tonight when I do my shot if that is the case.  She had a few other suggestions, too.  Instead of an ice pack, she said to fold an old, thin washcloth into quarters, wet it, and put it in a bag in the freezer.  She said people have had pretty good luck using those after shots.  Also, when I travel, she said to run a washcloth under hot water and that should be good enough for before shots, although taking a shower may be easier (I take long showers and take forever to get myself together afterwards, so the washcloth may just work better for me.)  Those are the only tips I remember at the moment.  I’ll write more if they come to me.

Then it was time to see Dr. Specialist.  She let me know that I was negative for NMO.  She reviewed the current MRI against the new images.  The brain lesions are basically unchanged.  We don’t have anything to compare the spine against, so there’s no way to tell what’s different.  She sounded concerned about the number of lesions on my spine and said a few of them were active.  She asked if I had any new symptoms.  I told her about the UTI last month.  That helped explain the elevated inflation levels shown in my blood work results.  I also mentioned that on April 6th my left hand up to the middle of the forearm was kind of asleep.  That lasted only 24 hours and since then has been a bit tingly.  My vision still isn’t 100%, but otherwise things are going okay.  Then she gave me three choices:

1.       Switch to Rebif – she didn’t have clinical data to point to, but in her experience she’s had better luck with Rebif for active spine lesions.

2.       Stay on Copaxone and do the IV Steroid with oral taper – I’ve only been on Copaxone for a bit over 2 months.  It could be too soon to know if it’s doing anything.   I’ve always passed on the IV Steroid.  She was surprised to hear that.  Although, with the new left hand symptom and all of those spine lesions, it sounds like I can’t avoid this much longer.

3.       Stay on Copaxone and skip the steroid – wait and see.

Regardless of the choice, she wants to see me in 6 months and we’re doing another brain and spine MRI then to see what’s going on.  She didn’t like the idea of waiting a full year.  I knew I should have fully funded my health Flexible Spending Account!!!  I mulled over the choices and said I’d get back to her tomorrow.

I also asked about the side effects of the steroids.  She said there’s a chance of moodiness and mood swings, increased appetite, etc.  She said blood sugar levels could rise.  Mine are always very low (the blood work showed them just out of normal range if I was fasting and I wasn’t fasting when they were done and I had just had a glass of orange juice and half a granola bar!)  Just to be on the safe side, I need to avoid concentrated sugar and also caffeine (which I already avoid.)  She said my reflux could increase, so to take two Zantac a day instead of the one I often take.  She also said I could get insomnia.  I already sleep pretty poorly, so she gave me a prescription for a sleeping pill to use if needed, but only while taking the steroids.  She didn’t like the idea of keeping me on a pill.  She offered a sleep study, but I think I’m dealing with enough tests and doctors right now, so I passed on that fishing expedition.

I think I’ve made up my mind and will go with Option 2.  I’m not ready to write Copaxone off just yet.  I’d like to see what 6 months brings.  If it’s not helping, I’ll have to strongly consider the switch to Rebif.  I have a bit of research to do on all of this.

With things going the way that they are and having no idea how to hide the IV steroid treatment and the likelihood that Mommy will seem batty, we decided it’s time to tell the girls.  People are starting to slip in front of them and I can’t risk them finding out by accident.  Now it’s just a matter of finding  the right time to tell them.  Tonight is Little Gym night for Little Sister and tomorrow is Brownies for Big Sister, so it looks like Friday night will be the night for the big discussion.  Please keep us in your thoughts that evening!!!  I’ll let you know when they know so that those of you who are around them can stop walking on eggshells about what you can say or not say.

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.

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