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!

April 25, 2010

Did It!

Filed under: Uncategorized — by mseds @ 8:35 pm
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I did it!  I gave myself a shot without the autojector!  A stomach shot was definitely the right place to start.  It was physically easy to do, my quite challenging mentally.  After a few minutes I got the narrow tip in, but just couldn’t push the needle all the way in.  It took me a couple of minutes before I was able to insert the whole needle.  I’m a giant wimp, so this was a huge step for me!  Then I had to press the plunger.  That took another moment and I did it very slowly.  It wasn’t without pain, but I wouldn’t call it painful.

I will admit that I didn’t like the manual shot any better than the autoject method.  My main reason for trying the manual method was because I had a lot of medicine drip out of the syringe when I pulled the cap puller off of the autoject.  Well, I had almost the same number of drips just pulling the cap off on my own.  So, I think I’m going to stick with the autoject for now.  I believe Rebif is working on new autojectors and I’ll just keep my fingers crossed that an improved version will be out soon!

April 23, 2010

Whimped Out

Filed under: Uncategorized — by mseds @ 9:32 pm
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Tonight was my first attempt at doing a shot manually and I whimped out! I’d had it with the Rebif autoinjector. It keeps dripping and makes my arms black and blue. I got shot training this a.m. and though I could do it. That was before I tried to do a right arm shot with my left hand, twisted upside down from how I practiced. I just couldn’t do it. I think I’ll try again next shot. A stomach shot seems like a smarter place to start!

April 19, 2010

Almost Normal

Filed under: Uncategorized — by mseds @ 8:12 pm
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I was about to post something about my Vitamin D post, but then I saw Lisa’s over at Brass and Ivory.  She shared the same info I was about to on Vitamin D and did so in a fantastic way, so no need to repeat that part here.  Check out her story on Vitamin D and Multiple Sclerosis.

Dr. Generalist II was the first one to want to check my Vitamin D levels, which I was thankful for.  It’s nice to finally know where I stand.  I got my results about a week ago.  I’m at 39-39-4.  According the NIH, normal is 30 – 74, so Dr. Generalist declared me as “normal” and said to not change anything.  At the time of the test, I was taking a multi-vitamin that has 1,000IU of D3 along with an extra pill of 2,000IU of D3.  So, 39.  Normal?  It was at the low end, so I did my own research and found some of the same info Lisa references. I also found this great table at

Vitamin D levels — what’s really optimal?

>100 ng/mL
Excessive vitamin D (see note on toxicity)
50–70 ng/mL
Proposed optimal range
30–50 ng/mL
<30 ng/mL
<20 ng/mL
Overt vitamin D deficiency
<10 ng/mL
Seriously deficient

According to this chart, 39 is “suboptimal”.  I decided to add an extra 2,000IU of D3 each day to bring me up to 5,000IU daily.  I’ve only been talking supplements since Jan.  I wonder how low I was before then!  I wonder how much higher my D levels will be with the extra 2,000IU.  I hope it puts me closer to the 50+ range.  I wish I knew just how much I need to get up there.  Unfortunately, the medical community has proclaimed my levels as “normal”, so it’s hard to get advice.

Just after I got my Vitamin D test results, I went to my CCSVI Doppler Ultrasound.  As part of the test, they took my pulse ox.  The only other two times I can remember having a pulse oximeter placed on my finger were during child birth.  My rates were low both times and they put me on oxygen through the delivery.  I’ve never had it tested during regular times.  Turns out I’m just about “normal” at 94.  They like to see healthy people at 95 or higher.  At 92 they start to get concerned.  So, I’m just skating by on both Vitamin D levels and my pulse ox.

I’m so curious to see if the angioplasty opening my veins also improves the flow of oxygen throughout my body.  It seems that it would, right?  So many of my MS symptoms (fatigue, weakness, light-headedness, feeling like I never get enough air, tingling extremities) are also signs of a low pulse ox level.  It makes so much sense.  The more I read, the more pieces seem to come together.  Why can’t people with years and years of medical experience not put two and two together?  Specialists are great, but I feel like I’m missing a person that can see the whole picture and put together all of the pieces.  The holistic picture is missing.  I know the line needs to be drawn somewhere, but it doesn’t make sense for doctors to write-off just-about-normal as something that doesn’t need to be examined further.

April 15, 2010

Look for an Interventional Radiologist

Filed under: Uncategorized — by mseds @ 6:15 am
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I was incredibly fortunate to have gotten the lead on a doctor via Facebook.  I hit a dead-end with every neurologist I asked about CCSVI.  I’m sure many of you are in the same boat.  I was on the crazy long list at Buffalo and just figured I’d have to wait it out.  Then I heard about Dr. Bonn in Wynnewood, PA.  That’s just outside of Philly and far closer to me than the 6+ hour drive to Buffalo!  I called last week and saw him this week.

I strongly encourage you to start looking for interventional radiologists near your home.  They are out there and are far more receptive to the idea of CCSVI.  They are also very capable of doing the surgery.  They have been doing this for years for other types of patients (e.g., dialysis.)  This is nothing new to them — just a new cause for blocked veins.  It’s quite awesome!

If you are interested in knowing more about someone’s experiences, check out Persistent in PA!  Thanks, Janet, for blazing the trail!

April 14, 2010

Blocked Veins!

Filed under: Uncategorized — by mseds @ 6:36 pm
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Bilateral interior jugular vein blockage!!  YEAH!!!  It was such a neat experience!  The woman who did the Doppler Ultrasound was training another technician on how to do it so that they could see more patients.  They have done this for years for other reasons, but I’m one of their first MS patients.  Everyone there is really excited about this.

While I was laying down, the left side had blockages.  Both sides were blocked when sitting up.  There was also noticeable reflux.  They could hear it on their Doppler.  I thought that was really neat.

I got a CD with the images and will try to post something soon.

I’m scheduled for angioplasty in a week and a half!  While I’m sedated, but alert, they’ll thread a catheter in through the groin area, insert dye, and check all of my major veins.  As they find a blockage, they’ll open it up with angioplasty.  They expect it to take about two hours.  After that, I’ll have to lay with my leg straight out for 4 hours.  They’ll do another ultrasound before I leave to see what things look like.

After that I’ll come back at one month, three months, six months, and one year.  They’ll redo the ultrasound and the MS Quality of Life Survey each time to see how things are going.the way

By the way, my MS QOL survey results before angioplasty are:

Physical Health Composite: 74%

Mental Health Composite: 91.7%

I have the MS Walk a few days after the procedure.  They think that I’ll have an even easier time walking just after surgery than if I wait until afterward.  That’s pretty encouraging!  I can’t wait to add my CCSVI info to the back of my MS Walk shirt!

Doppler Day

Filed under: Uncategorized — by mseds @ 9:44 am
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Today is Doppler Day!  I’ll finally get to find out if I have blocked veins!  I’m more nervous than I expected to be.  I’m not at all nervous about the actual procedure.  There’s certainly nothing scary about an ultrasound.  I’m nervous about the results.  I’m worried that they won’t see any blocked veins and that I’ll have had my hopes up for nothing.  I don’t tend to be skeptical, but this week has been pretty lousy so far.  It has me questioning things whereas before I think I was pretty confident.

It’s strange to be wishing for “bad” medical news.  I really do want them to find blockages so that they can be opened and perhaps bring some relief.  It may not be a cure for MS, but perhaps increased blood flow will make a difference in my general health and well-being.  I can’t imagine it would be a bad thing!  I’m still amazed by the CCSVI research and am so thankful that I finally found someone who isn’t just blowing it off.

I’ll try to write with an update as soon as I get home.

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