Life with MS & EDS

December 20, 2009

Sums up my feelings about CCSVI

Filed under: Uncategorized — by mseds @ 9:00 pm
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An article written by Dr. Ashton Embry, “Hope and Elation – Frustration and Anger – Fear and Loathing: The Contrasting Emotional Responses to the Revolutionary Discoveries in MS Made by Dr Zamboni” so completely sums up my feelings about CCSVI.

When I first heard of this breakthrough I was over the moon!  A discovery of this magnitude was beyond comprehension.  I was elated.  Within a couple of weeks, my happiness turned to frustration.  Dr. Specialist called this “too soon for prime time” and I wasn’t even about to ask Dr. Generalist about this (by the way, I’m replacing him and will start seeing a new generalist in February!)  I’d asked every person I know of in the medical community or who was related to someone in the medical world if they knew of someone, anyone (!) who would do this scan for me.  It’s been a month of searching and I cannot find anyone to talk to.

I’ve pondered doing cold-calls to cardiologists and vascular specialists, but if I can’t get anywhere with people I know, how should I expect strangers to jump on board?  I feel like I’d be setting myself up for even greater disappointment.

Fear and loathing seem a bit extreme, but I am certainly growing more and more angry about the lack of response from the US media and from the doctors who are supposed to be treating me with my best interest in mind.  I’ve grown very suspicious of everyone’s motives.  Dr. Embry captures my thoughts on this exactly.  This is such a radical change that it’s no surprise neurologists are responding the way that they are.  It’s frustrating at best, but slipping quickly towards infuriating!

I remain hopeful that this breakthrough will actually break through and that those of us who want to have the scan will be allowed to and that there will be enough doctors out there willing and able to do the scans.  I remain hopeful that research funding will be available to determine the best way to unclog our blocked veins.  I’m optimistic that this will change the way in which MS is managed with medication, but not 100% sure we’ll all be able to stop taking our current medications.  Much more research needs to be done to find out the affect of iron already in our central nervous system.  Perhaps a whole new line of medications and treatments will develop that focuses on how to deal with the iron.

I guess I do remain hopeful, but that’s just my nature.  I’m still pretty darn angry and frustrated!

December 9, 2009

Buffalo Research Update

Filed under: Uncategorized — by mseds @ 1:46 pm
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This morning I got an e-mail from the “Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation in MS and Related Diseases study” folks at the University of Buffalo.  They acknowledged receipt of the online questionnaire I completed, but informed me that it will likely be 1 – 2 months before I hear back from them.  They’ll either inform me that I’m eligible or that I didn’t qualify.  Either way, it’s nice to have a time line and to know that they’ll contact me regardless.

They also reminded me that they will not be providing any of the CCSVI images to patients or their doctors, however MRI images will be available if requested.  I’ve still not found anyone to do the doppler, but I’m not giving up!  It’s just taking longer than I thought it would.

December 6, 2009

Rebif – Day Two

Filed under: Uncategorized — by mseds @ 12:39 pm
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My second Rebif shot went much better than my first!  I was hesitant to try an arm shot, but it was next on my rotation schedule, so I stuck with it.  After a bit of fumbling with the auto-injector (it’s much stiffer than my Copaxone one!), it went well.  I didn’t have any pain, nor did I experience any of the side effects I had after the first shot.  I had a minor metallic taste about 45 minutes after the shot, but it passes quickly.  I did not have any stomach cramps the next morning either.  My favorite part is that I get to take two days off from shots!!  I’m off to D.C. for a business meeting tomorrow and it’s awesome to not have to pack medication.  I can just do it when I’m home Monday night.  So far, so good!

December 3, 2009

Rebif – Day One

Filed under: Uncategorized — by mseds @ 9:10 am
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Yesterday was my first experience with Rebif.  The medication arrived on Tuesday and the nurse came to do training yesterday afternoon.  I must say that the MS LifeLines nurse was fantastic.  I liked her a lot more than the Shared Solutions nurse that came to do my Copaxone training.  In all fairness to that nurse, I think her main objective was to get me over my fear of needles and in that regard, she succeeded.  The Rebif nurse came in at a time when I was far more knowledgeable about MS and basically over my needle fear.  I just needed to get past my concerns about Rebif!

We had a great discussion about the differences between Copaxone and Rebif and how doing the shots was different, yet similar.  Here are some tips and observations I picked up:

  • The auto-injector is almost exactly the same, just different in color and the Rebif one is just long enough that it doesn’t fit in the Copaxone travel box while assembled.
  • The amount of medication injected for Rebif at its full dose (0.5 ml) is half that of Copaxone (1.0 ml).
  • Both Rebif and Copaxone are pre-filled shots with 29-gauge needles.
  • Rebif is a “live” shot whereas Copaxone is not.
  • While Dr. Specialist recommended taking Aleve ahead of the shot, the nurse said to start with Tylenol explaining that if I start with the strongest and don’t really need that level of medicine, then I’ll never know.  I can go along with that.  Also, but taking Tylenol first instead of Motrin or Advil, I can take Aleve later if needed.
  • Instead of doing the shot right before bedtime, the nurse encouraged me to do it closer to 7 p.m., as long as I was okay with the girls being awake during my shot.  Her reasoning was that if I am going to spike a fever after the shot, it’s better that it doesn’t wake me up.  She said it’s better to deal with that while awake, get the fever down, and then go to sleep.  That made sense, too.
  • Unlike Copaxone, Rebif should be massaged after the shot to encourage it to be circulated away from the injection site as quickly as possible.  This is another reason that using heat rather than ice after the shot is the routine.
  • Whereas Copaxone can leave a red, allergic reaction at the injection site (which happened to me often, especially on my arms), Rebif leaves a smaller, deeper red bruise.  She confirmed my speculation that this happens more often with the auto-injector, given it’s force, than with doing the needle manually.  Given my tendency to bruise easily and my translucent skin, we assume that I’ll see these bruises.
  • She reminded me that I need to get bloodwork drawn every 3 months to check my liver enzymes and thyroid levels.  I said I already have my prescription for that and will mark reminders on my calendar.  They already have a baseline from earlier this year when I had a ton of blood taken, so I can wait until 3 months from now for the first test.
  • Assembling the auto-injector was exactly the same as with Copaxone.  There’s one extra step – she said to flick the assembled auto-injector after that cap is pulled off a few times to make sure there isn’t any medication at the tip of the needle.  Medication on the tip will cause burning just like injecting into skin where the alcohol hasn’t dried.
  • We talked about injection sites.  I said I wasn’t willing to try my thighs after my bad experiences with them on Copaxone.  She said if I did want to give them a try again, to sit in a chair and bend my foot outward to relax the muscle to make it less likely that I’d inject into it.  That was a nice tip, but I don’t plan to ever use it!
  • I shared my injection site diagram that I developed for Copaxone.  She loved it and said I can keep using it.  I can improve upon it because the stomach is actually considered 2 shot areas, dividing the left and right.  Very nice to know!
  • She also recommended that I divide the rotation in half and do right side of the body one week and the left side the other week.  I loved that idea, so I’ll edit my rotation schedule for that.
  • Then we talked about timing.  She reminded me that I need to keep 48 hours between injections and that I need to fit in 3 a week.  At the beginning of each month, I’ll look at my plans for the month and can map out the shots.  I have a map for this month that avoids times when I’m on travel and that skips Christmas Eve and NYE!
  • She was very encouraging.  She said that I really shouldn’t have much side effects at the lowest level in the titration pack.  I’ll have 2 weeks at 8.8 mcg, then 2 weeks at 22 mcg before going up to the full 44 mcg.  She said that I may notice more side effects at the 22 mcg level, but that the real test wouldn’t be until the full 44 mcg dose.  She said about half of people get side effects and that most adjust within 6 weeks.
  • Lastly she reminded me that despite my really good attitude, that I need to watch out for signs of depression and to remind my husband to watch out for any mood changes (Nothing Knew, consider this the reminder.)

After the training we had an interesting discussion about CCSVI.  She was also really excited about it.  I said I was trying to search for a doctor who would do an evaluation for me, but that I wasn’t getting very far.  She mentioned the Buffalo study and I told her I already applied.  She encouraged me to keep an eye on news from the MS Society and other reputable sources.  I said I was frustrated with their slow response to this research and we talked a bit about why we think that is the case.  She did encourage me to write to my local chapter to ensure they know I’m interested in CCSVI and to inquire if they know of anything going on in our area with regard to research or treatment.  I’ll let you know if/when I hear anything back!

So, onto last night.  I had a meeting yesterday evening, so I didn’t get to do the Rebif shot until 9:30.  I took Tylenol about 30 min. before the shot.  Then I used heat (one of the Shared Solutions heat packs) for 5 minutes on my hip (typically an easy Copaxone shot location, so it seemed like a good place to start) and then alcohol.  Once the alcohol dried, I flicked the auto-injector to make sure there wasn’t any medication on the needle’s tip and then held my breath and hit the plunger button.  There was a surprising amount of pain when the needle entered my hip.  My husband was next to me on the phone with his aunt, so thankfully I watched my language, but wow, that didn’t feel very good!  Although, unlike the Copaxone injection, I had no pain at all after the shot!  I massaged it a bit and reapplied the heat, but it wasn’t very hot by then.

Then I sat and waited.  We decided to watch TV in bed, which was nice.  I was glad that I didn’t get any flu-like symptoms, but by 10:15 I noticed a strong metallic taste in my mouth.  It wasn’t as bad as the taste I got with Solumedrol, which made me want to eat a kitchen’s worth of food to quench, but it was not pleasant.  I fell asleep close to 11 and by the middle of the night the taste was gone.

I didn’t have a great night’s sleep, but I never do.  I won’t blame that on Rebif.  When I woke up this morning I had a strong pain in my left side.  I’ve been awake for 3 hours now and it is just starting to subside.  I sure hope this doesn’t happen every time!

I know I need to give Rebif a try and that it may take a few months for my body to get used to it.  It’s nice to not have pain after the shot like with Copaxone, but at least the side effects on that drug were easier to handle.  I’ll try to keep my positive attitude!  Who knows, with any luck, the CCSVI research will get rid of all of this or at least drastically change the way we treat MS.  I’m extremely hopeful!!

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