Life with MS & EDS

April 28, 2010

So close!

Filed under: Uncategorized — by mseds @ 7:08 pm
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I was so close to getting my veins open!  Just 40 hours before surgery, I was told that the doctor (my interventional radiologist) was informed by his lawyers that he needed to stop performing angioplasty on MS patients.  Yesterday morning, a woman was in the OR with the IV inserted when the lawyers gave the order to stop immediately.  The doctor was informed he had to go through the hospital’s internal review board (IRB) for approval before proceeding.   I found out via Facebook and was instantly in tears.

I spent most of last night crying.  I was kicking myself for not asking for an earlier surgery date, very frustrated and angry that I missed what was a smaller window than I expected. I couldn’t understand why they’d stop something that this doctor had been doing for decades.  I wanted to know how they discover blocked veins in other types of patients. What symptoms make them look for this? I bet we have the same exact symptoms.  So, if the procedure has been used to treat those symptoms, then why are we different? It felt like discrimination.  I’m not asking for this as treatment for MS.   I just want this to improve my blood flow.  I want this to bring up my low pulse ox.  I want this to improve my fatigue.  I have no expectation that this will stop lesions from growing (that would be a nice extra benefit, but I don’t expect it.)  I just want to improve my quality of life.  I couldn’t understand why this is different in any way or why it needs to go through the hospital’s review board.

I called the doctor’s office first thing this morning and he called me back around 9:30 to explain.  I asked the very questions I couldn’t stop thinking about last night and was given answers I suppose I can understand.  The doctor explained that while he was unhappy about having to stop for now, that he thinks the IRB members are educated, reasonable people and that once everything is documented, that he’ll be allowed to proceed.  He expects the process to take two to three months.  He needs to write a more detailed consent form.  I asked him why this is different from his other patients.  He said that his dialysis patients have narrowed veins because of scar tissue build up from their catheters, which puts pressure onto the vein.  In MS patients, we have “virgin veins”.  There’s no known external reason for our veins to narrow.  Research still needs to be conducted.  So, until the cause is known, they need to adjust their consent form to acknowledge this gap in understanding so that patients can indicate that they are okay with this and so that the lawyers can cover their asses.

I’m still feeling every negative thing you can think of, but I’ve stopped crying, so I suppose that’s progress.  I’m trying to focus on the likelihood that this is just a setback, not an end of the road.  I asked what those of us who are waiting can do to help and he said raising awareness about CCSVI through blogging, Facebook, talking with others, etc. is about all we can do right now, so that’s my plan.  I’m doing the MS Walk this weekend with old friends and new ones (including a new friend who was fortunate enough to have had the surgery last week.)  We’re going to make signs and posters demanding that the MS Society do more to support CCSVI research.  We’re on a mission!

May 4, 2009

MS Walk 2009

Filed under: Uncategorized — by mseds @ 3:20 pm
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Six months ago I never expected that I would have spent this past weekend doing the MS Walk in Ocean City, NJ.  Six months ago I didn’t even know I had MS.  A lot has changed in the past half year.

The first time I heard of MS is when someone asked me to donate to the MS Walk.  I have cousins who do the walk every year and I’ve always donated to their efforts.  Earlier this year I thought about doing a walk, but at the time my girls didn’t know I had MS.  My girls know I’m a crew captain for the Breast Cancer 3-Day and that’s their only frame of reference for a “walk.”  I do that in memory of a friend who lost her life at the age of 35 after battling breast cancer for only nine months.  I still remember when she came to Big Sister’s birthday part in April 2007 and said she had just found a lump while nursing her baby.  From there it was a rapid slide from Stage 2 to Stage 4 breast cancer.  She passed away just before Christmas 2007.  I wasn’t sure how to tell my girls that Mommy has something people do walks for.  I had a difficult time getting past that since they know I do the 3-Day so that other girls won’t lose their mommies like our friend’s family lost theirs.  Even once we told the girls last month that I have MS, I still wasn’t sure how to tell them about the Walk.  I didn’t want them making any connections between the 3-Day and the MS Walk.  Yes, MS is important enough to walk for, but we’re not doing this because it can kill Mommy, because it won’t.

My last MRI is what motivated me to sign up for the MS Walk.  I felt helpless knowing that there are a ton of lesions on my spine.  That was quite a shock after thinking things were pretty good with only 3 spots on my brain.  Other than staying on my daily drug and doing the steroid treatment, there wasn’t anything I could do about it.  Then it occurred to me that there certainly is something I can do about it.  I can walk.  I can ask friends to walk with me.  I can ask friends and family to support me.  Together we can all do something about it.  We can raise money and awareness to fight this for me and the thousands of others like me.  It was empowering to take on this challenge.

Soon after I registered, four friends and someone I don’t even know (a friend of a friend) joined to walk with me.  I was so elated!  It all came together very quickly and in less than a month our team raised $1,000!  As important as raising the money and doing the 4 mile walk (which was a bit of a challenge for me) was the time I got to spend with these amazing ladies.  We’re very fortunate to have access to an old beach house, so we made an overnight of it.  We had great food and great conversation.  A get-away was just what I needed after Day Ten on Prednisone.  Many of the ladies are walking the 3-Day this year, so it was a nice training walk for them.  We even reminisced a bit about our friend who passed away.  She would have appreciated that we had a few laughs when thinking about her.

While it’s hard to fundraise for two important efforts, I decided that I’m going to give it my all and hopefully continue to make a difference for both.  From Mother’s Day through October, I’ll focus on the 3-Day.  Now from October through May, I’ll focus on the MS Walk.  Next year I hope to be able to do VIP Check-In.  We all deserve a world free of breast cancer and free of MS.  I hope I can do my part.

May 2, 2009

Prednisone – Day Ten

Filed under: Uncategorized — by mseds @ 9:07 pm
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I’m going to keep this very short.  Today was basically the same as yesterday, except I needed a morning nap.  It was a productive morning before the nap.  I called Disney at exactly 7 a.m. to get reservations for Little Sister to have lunch with Cinderella for her b-day later this summer.  It was as satisfying as snagging concert tickets!

We’re having a great girls’ weekend at the shore house.  This is just what I needed.  We got in a 1 mile trial walk today.  That’s all the prep I’ll have before the 4 miles tomorrow.  Hopefully it will go well.  At least I’ll have great company.

April 7, 2009

MS Walk

Filed under: Uncategorized — by mseds @ 12:46 pm
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After thinking a lot about my MRI results, I starting thinking about what I can do about all of it.  I’m taking my shots each day, but that doesn’t seem like enough.  I want to do something more to fight this.  There doesn’t seem to be much I can control about MS, but there has to be something I can do.

Then it occurred to me that there are MS walks all over the country.  There’s something I can do to get moving and to raise money to help all of us with MS.  I just created a team and signed up to do the walk in Ocean City, New Jersey on May 3rd.  It’s 4 miles of boardwalk walking (which is much easier for me to walk on since it doesn’t hurt my joints as much as cement.)  I’m pretty out of shape, but I think I can do it with a little bit of prep.  I’ve invited some friends to join me.  I think it will be a fun girls weekend at the beach.

Thanks Posey for your support!  I’m looking forward to the walk, but think I’ll enjoy kid-free time with friends and visits to Bashful Banana just as much.  I hope others will join us, too!

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