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.

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6 Comments »

  1. Sounds like a lot to process! I’ll keep you in my thoughts on Friday. From experience, it goes better if you are really calm and don’t give too many details to start. The details will get filled in after you get grilled. We still get a few questions about hubs’ condition every now and then.

    Comment by ltrs2karen — April 15, 2009 @ 8:01 pm

  2. Good luck with all that you are going through. I have had good luck with IV steroids. The best part is all the extra energy you will have when you are on the IV.
    Take Care

    Comment by GG — April 15, 2009 @ 10:52 pm

  3. I am curious to see what questions they come up with. I’m sure my little one won’t ask anything, but my 8 year old is bound to come up with things I’m not expecting. Our plan is to relate this to the people she knows who are diabetic. They take insulin because their bodies need some extra help. I have MS and my body needs a little extra help, too!

    Comment by mseds — April 16, 2009 @ 7:22 am

  4. Thanks! I hope it goes well. My biggest fear is that my brain will get all of the extra energy and my body will be too fatigued to take advantage of it. I could really use some extra energy, so hopefully my body will cooperate. I’m glad to hear you had a good experience with these. I wish they could do them in pill form, but I’ve read mixed opinions as to whether pills are as effective as the IV version. I’ve always hated IVs!

    Comment by mseds — April 16, 2009 @ 7:26 am

  5. Hi there, I was just diagnosed with MS two weeks ago and came across your blog today. It’s been a great resource for me thus far and just wanted to thank you for putting yourself out there. It’s been tough finding people my age who have recently gone through the same things. Thank you!

    Comment by ebmccullough — April 16, 2009 @ 5:50 pm

  6. Sorry to hear about your diagnosis. I’m glad you found the blog and that it’s been helpful. There’s a great MS Blogging Community out here. I’m only 5 months ahead of you in dealing with this, but if there is anything I can do, please let me know!

    Take care,
    Ivy

    Comment by mseds — April 16, 2009 @ 7:41 pm


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