Life with MS & EDS

March 21, 2011

Angioplasty, Round 2

As a kid, I always had trouble running.  The “runner’s high” that others got left me nauseous, made the world turn black, muffled my hearing, and resulted in me falling to the ground.  Maybe I was allergic to adrenaline?  I’d also black out in warm department stores and from strong odors.  I saw a neurologist twice while in grade school, once in elementary school to find out why I was passing out while running and once in high school to find out why chem lab made me faint.   I was never given a reason for my fainting; just excuse notes to get out of whatever was triggering it.  Years later I may finally have some answers.  What does any of this have to do with CCSVI and angioplasty?  I’m getting there….

I first had angioplasty to open my jugular veins this past summer.  Things were great for several months.  The best part was that I had more energy.  The fatigue was basically gone.  Around Christmas I noticed the return of some symptoms.  I was getting really tired again, my arm strength had decreased, the toe cramps were back, my arms were falling asleep again, and the tingling above my upper lip was also back.  I was pretty sure my veins were closing back up.

I was fortunate enough to have been on Dr. Sclafani’s wait list since last year and heard from his office at just the right time.  I drove up to Brooklyn to have my ultrasound and sure enough, my jugulars were refluxing again.  We set up a time for angioplasty.

I must admit that I was more nervous this time.  Unlike last time when I was heavily sedated, I’d be awake through this procedure.  I had talked with Dr. Sclafani after the ultrasound and was very impressed with his knowledge and passion.  I had heard great things about him from people I trust, so I knew I was in good hands.  That helped calm my nerves.  His nurses were also great at keeping me calm.

Dr. Sclafani spent time talking with me and my husband for a while before the procedure.  Although admittedly not a neurologist, he did a basic neuro exam, which was pretty telling.  He was able to see that my right eye drifts and doesn’t exactly follow the way I want it to.  We talked about other symptoms and experiences, including Ehlers-Danlos Syndrome.  He had recently seen another EDS patient, so he was up to speed on the basics, but it’s still new to him.  We talked briefly about something called Dysautonomia and his suspicions that this might be something that affects me.  It was the first time I had ever heard that term.  I figured I’d ask him more about it after the procedure.

The procedure itself went pretty well.  I even got to pick the music we’d listen to.  In a way, I was glad to be awake.  It was good to be able to talk with him and to be part of the decision making process.   Not to scare anyone off from doing this, but there was some pain involved during the ballooning, but nothing worse than labor pains and Lamaze breathing came in handy.  My right jugular was still open from last time, which was good to hear.  The valve was a little off, but not enough to be a concern.  The left jugular was a problem once again.  He was able to get into it without the problems the first doctor had, but he wasn’t able to get the balloon to fully inflate.  We talked about some options.  One would be using a larger balloon and seeing if inflating it more would work, but he was worried the vein couldn’t handle it.  We also talked about doing a stent.  Stents worry me.  I don’t think they have made ones that are right for veins yet, so I passed on that option.  We decided to leave things as good as he could get them with the conservative approach, which was still more open than the vein was, and see what happens in three months.  I’m pretty sure I’ll be back on the table for the left jugular!  After that he checked for May-Thurner, but didn’t find any sign of issues with the iliac vein.  Then it was on to the azygos.  Last time, the doctor didn’t see anything wrong with the azygos.  Thankfully Dr. Sclafani has started using internal ultrasound to really see what is going on.  From the outside, the azygos looked wide open, but from the inside he could see that it was much smaller.  He ballooned the azygos in two spots.

Recovery was much different this time, too.  My husband was allowed to come back right away and a nurse was with me most of the time.  I still haven’t mastered drinking while laying down, but did figure out that if I turned my head to the side, juice wouldn’t go up my nose.  After resting a while, it was time to take out the sheath, the tube they use to thread everything in through.  That’s where things took a turn for the worse.  He pulled off the adhesive and probably underestimated how stretchy my skin is because it didn’t pull off as easily as it does on other people.  The “just rip off the band-aid” approach doesn’t work on me.  I need to remind docs to hold down my skin as they go.  After that, he started to pull out the sheath.  I instantly got nauseous.  My pulse and blood pressure plummeted.  I started to sweat.  It was awful!  He got it out and as he was holding pressure on the insertion area, my body started to cooperate again.  I almost went into shock.  Not good.  We started talking about Dysautonomia again.  It does seem like something I need to learn more about.  Apparently my body doesn’t respond as it should to things like adrenaline.  Most people feel pain and their pulse increases.  The “fight or flight” instinct kicks in.  Not for me.  My body shuts down.  It’s kind of scary.

Dr. Sclafani’s instructions were to go back to the hotel and relax and to order in dinner, so we enjoyed pizza in bed.  While lounging, I decided to do some research about Dysautonomia.  Dysautonomia is where the automatic nervous system malfunctions.  There’s a whole host of things associated with it and people with Ehlers-Danlos Syndrome seem to have this more often than others.  I haven’t yet learned enough about it, but decided it is time to finally find an EDS doctor.  I haven’t located anyone in the Philadelphia area, so it’s time to widen my radius.  I have heard some folks mention someone down at Johns Hopkins.  That wouldn’t be a bad drive.  I’ve been focused so much on the MS, that I’ve been ignoring the EDS, thinking it wasn’t a big deal.  Then a thing like almost going into shock from something pretty simple happen and it makes me rethink things.  I feel like I have a lot of puzzle pieces scattered on a table and I can’t seem to form a complete picture.  There are pieces that are clearly MS, some that are clearly EDS, and then a bunch of others that seem to be both or neither.  I wish there was a doctor out there that could put the whole thing together for me and to help me make sense of things.

August 11, 2010

CCSVI – The Downside of Angioplasty

Filed under: Uncategorized — by mseds @ 2:57 pm
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It’s been almost two weeks since I had angioplasty to open my jugular veins and I’m beginning to notice the downside:

1.  I am stuck cleaning the house -I have more energy now, so I can’t just sit there while others clean up around me.

2. I do more dishes – Since my sense of smell has returned, stacks of dirty dishes drive me nuts.

3. Less computer time – I’m starting to exercise, so my time spent on addictive computer games is diminished.

4. Summertime + being more active = more sweat.

I look forward to seeing what negative I discover next!

August 1, 2010

CCSVI – Day After Angioplasty

Filed under: Uncategorized — by mseds @ 8:08 pm
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Yesterday, Day 1 after angioplasty, was another great day.  For once I was not the most tired person in the house.  In fact, I was the only one who didn’t nap!  The down side of no fatigue is that I stayed up way too late.  I need to learn to recognize normal signs of being tired.  I did my Rebif shot around 9 p.m., which was a little earlier than normal.  I was wide awake, so I stayed downstairs and caught up on some TV.  Around 11:30 I started feeling sick.  I was freezing cold and nauseous.  I had taken Aleve as I always do before my shot, but I guess I usually go to bed far before I’d feel significant side-effects.  So, lesson learned.  I must make sure that I go to sleep within an hour and a half of doing my shot, even if I’m not tired.

Otherwise things were going well.  I still had some pain in the area of the left jugular, but not as bad as the day angioplasty was done.  I had slight tenderness at the insertion site, but I didn’t really notice it unless I touched the area or something pressed against it.  Obviously fatigue wasn’t a problem!  Not only did I not nap, but I walked around the mall for a while, tried on clothing, and still wasn’t tired.  I’m enjoying the new me.  I feel like the clock has been turned back about 10 years!

July 14, 2010

Achieving Normal

Filed under: Uncategorized — by mseds @ 7:24 pm
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During my first quarterly Rebif bloodtest, Dr. Generalist had ordered a Vitamin D test.  As you may recall, I scored a 39.  I was told that was “normal”, but most online advice says you need to be over 50.  So, instead of keeping with my 3,000ICUs of Vitamin D daily, I added another 2,000, even though it wasn’t doctor-recommended.  My total daily Vitamin D supplement was up to 5,000, plus whatever I got from food (e.g., milk, Vitamuffins, etc.)  I absolutely noticed a difference in my energy level.  I’m still chronically fatigued, but I am no longer on the verge of tears because of it.  It becomes very obvious to me and my husband when I forget to take the vitamins.  I knew there was a big difference, but I didn’t have proof.

So, I brought this up with Dr. Specialist when I saw her last month.  I had asked her about Vitamin D at some point last year.  At that time, she wasn’t on board with its benefit and didn’t recommend blood tests to check levels.  She’s since changed her tune now that more evidence is out there.  She wrote a script to check my D levels during my 2nd quarterly Rebif blood work.  Sure enough, the results confirmed what I’ve noticed.  My level is up to 61, definitely over the 50 I was hoping to exceed.  The extra 2,000ICU daily brought my levels up by 22.  I wish everything was that easy to fix.

I’m enjoying my small victory and success with going against doctor’s orders to do something that was clearly in my best interest.

May 18, 2010


Filed under: Uncategorized — by mseds @ 7:23 pm
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I just realized it’s been a while since I last wrote.  Things have been pretty uneventful the past few weeks.  I did the MS Walk earlier this month and had a couple of other events that required a lot of energy.  I made it through them wonderfully, but then it takes at least three or four days for me to feel like I’ve recovered.  This past weekend I took Big Sister’s Brownie Troop on an overnight and got very little sleep.  I slept most of the next day and it’s taken until today for me to feel like I’m back to my normal level of fatigue.  I cannot tell you how much I am looking forward to the CCSVI procedure to unblock my veins.  I’m positive that it will have a huge impact on my quality of life.  I’m tired of constantly being unenergetic!

Not much else is going on.  I’ve been having more EDS problems than MS problems.  My DeQuervains is starting to act up again, so I’m being extra careful with my hands, especially my thumbs.  I feel like my writs are bending in weird ways.  I’ve also had a lot more ankle problems.  My ankles are collapsing more often when I’m walking.  My ankle gave out on the way into voting this morning and took my husband by surprise.  I got a “what was that?!”, to which I replied, “oh, just my ankle collapsing again.”  There’s got to be something I can do to make them stronger so that I don’t actually fall and injure myself one of these days.  When Little Sister was a baby we used to use Kinesio tape on her stomach and legs to increase her strength.  We still have a lot of the tape left and I think I’m going try to find out if I can use it on my ankles.  I’ll pass along anything I figure out and welcome advice anyone else has figured out about bendy ankles!

February 26, 2010

Mind Over Matter

Filed under: Uncategorized — by mseds @ 10:01 pm
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As you know, I’ve been less than happy with Dr. Generalist and dumped him a few months ago.  I tried a new generalist that Dr. Specialist recommended.  My husband and I met Dr. Generalist II about a week ago.

I brought with my giant folder with MRI films, CDs, lab reports, doctors notes, and other papers related to my diagnosis.  I think my Ehlers-Danlos letter is in there, too.  After talking with the gentleman for a while, it was time for the exam.  It was the standard, “walk down the hall and back, walk on your heels, walk on your toes, shut your eyes, put your arms out, and touch your nose.”  Okay, I’ve done this all before.  No problem.  I’m good at the drunkard tests.  Well, I used to be good at them.  This succession of task orders was quicker than in previous exams.  I’d like to blame the pace for my inability to find my nose!  I thought I did somewhat okay, thinking that I hit the bridge of my nose rather than the tip, but I was mistaken.  While the doctor left us alone for me to get changed after he checked my reflexes and sensation, my husband turns to me and says, “you know you missed your nose, right?”  I explained that I didn’t think I was that far off to which he responded, “the first time you hit your eye.”  Yea, whoops.  He was probably right.  At least I was able to laugh about it.

After I got dressed, we went back into Dr. Generalist II’s office to talk.  While I was getting changed he had time to review the contents of the giant folder.  We talked about my history and where to go from here.  I explained that the original Dr. Generalist felt like he was playing second fiddle to Dr. Specialist and that he didn’t know enough about MS, so it just wasn’t working out.  It was only slightly less awkward than trying to explain to a new significant other why you dumped your ex.

We got into a discussion of MRIs and if I should keep getting MRIs down at Penn.  While we were on the topic of MRIs, he commented that, “given these MRI results, I’m surprised you can walk without a cane.”  I’ve had a hard time getting that statement out of my head since he said it.  I asked if it was unusual.  I take it that it is not common because his response was, “it’s better that you look like you do than your MRI does.”

Somewhere during that discussion we also talked about my Vitamin D levels and I said that I have no idea what my level is, but without daily supplements, I get extremely fatigued.  He said that the 3,000 IU I take daily is probably a good amount, but that he’d like me to get my blood tested to see what my levels are so that we can adjust the daily amount if needed.  I need to get my 3 month Rebif blood work soon anyway, so I’ll do that at the same time.  I’m glad he suggested the test.

I also asked about CCSVI.  He said I was the third person that week to ask about it.  I confirmed his guess that there’s a lot of buzz online about it.  He confirmed my assumption that the neurology world just isn’t ready to get on board.  He did say that he read the research and that it’s usually the kind of thing he’d be suspicious of, but he respects the doctors at Buffalo and that he’s curious to see their research.  I told him that I applied for their study and the testing there.  I guess that’s still my only hope since no one around here is willing to do the testing.  The folks at Buffalo sent out a note today saying that over 500 people have already applied for the testing and that they hope to contact people soon.  They plan to start testing in March.  That was good to hear!

So, the guy seemed decent and knowledgeable enough that we decided that I’d see him twice a year, but keep seeing Dr. Specialist for the MRIs.  It’s better to keep with the same MRI machines and I’d like to keep seeing her.  I’d keep seeing her exclusively, but she thinks it’s important for me to have a more accessible doctor in case anything ever comes up.  I think this guy won me over when we were talking about my diagnosis process.  I explained that I’d have been diagnosed much sooner if the first neurologist would have checked my spine back in 2001 and his response was that it’s not the patient’s responsibility to have known that.  I liked his attitude.

Ever since finding out that I have a lot of lesions on my spine, I’ve always been curious why I have so few symptoms.  My optic neuritis in my right eye seems permanent and I fatigue without Vitamin D, but otherwise it’s easy to forget that I have MS (except for the Rebif shots, of course.)  Then I have a neurologist basically confirm that it’s pretty amazing that I’m as symptom-free as I am and it makes me wonder.  Some people say it’s luck, some have even said it’s because G’d is with me (not sure about that one), but I think it’s mind over matter.  I’m someone who can talk myself out of getting a cold and will myself not to puke when nauseous (except while pregnant), so is it that strange to think that it’s mind over matter that I walk as well as I do?  Mind over matter is pretty powerful and I need to stop second guessing it.  It’s just not an option to lose the ability to walk, so I plan to keep on walking.

November 16, 2009

Greatly Appreciated

Filed under: Uncategorized — by mseds @ 3:33 pm
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The past 12 days have been extremely busy and I was worried that I just wouldn’t have the energy to get through it.

It began with my husband’s short business trip, during which the girls were pretty darn good, thankfully.  Over those 3 days I packed the rest of us up, then on Friday we picked him up from the train station and off we were on a 6 hour drive for a long weekend in Williamsburg.  It was a great vacation!  Little Sister handled this far, far better than Disney!  I was pleasantly surprised. Unlike Disney, there was no assault on the senses.  She got sick of eating meals out, so we brought dinner in one night,  and she didn’t want to walk into the visitors center in Colonial Williamsburg, but once we got her to the kids orientation walk, she warmed up and really enjoyed it.  She’s sensory seeking when she’s in control of things.  One of her favorite parts was just walking on the cobblestone and crushed up shells.

On the way home from the vacation we stopped part way in D.C.  While trying to find a place to park to see the Air and Space Museum we drove by 75% of the buildings I’ve worked in.  I miss D.C., so it was nice to stop by.  We even met up with a good friend for dinner and arrived home only a little later than expected.

The next day was Veterans Day (one of my 2 favorite Federal holidays since I am the only one who has off in the family!)  My original plan was to be able to sleep in, but instead I had to go into town for my brain MRI, so I was out the door by 6 a.m.  That night I had to drive back down to D.C. for a meeting the next day.

I arrived back home just in time to see the girls before bedtime on Thursday.  Friday was a work day and that evening I scrambled to get ready for my Brownie Troop’s first camping trip.  We were out the door by 8 a.m. Saturday morning for another busy two days.  By Sunday afternoon I just wanted peace and quiet and time to sleep.

The greatest thing I learned through this experience is that I can do it when I need to.  I’m pretty good at mind over matter and can push through when needed.  I knew this would be a stretch, but I’m proud that I pulled it off.  Another thing I learned is that I need to avoid trying to do the round trip to D.C. in less than 24 hours.  It’s just too much.  I am going to start taking advantage of travel days and not feeling so guilty about missing my girls’ bedtimes.

There are three things that I am really grateful for (in no particular order.)  First is my husband and his mom for taking the girls out yesterday afternoon so that I could get some much needed sleep.  The second is that our good friends loaned us their timeshare for our vacation.  It was great to have a retreat.  The third is my fantastic coworkers and bosses.  When I met up with my friend for dinner outside D.C., she gave me a “care package” from my team.  It was a sweet card of encouragement and it was full of awesome gift cards to restaurants, a book store, and of course a place to get chocolate.  It was so greatly appreciated!

People ask what I need or how to help, but honestly I never know what to ask for.  It was such a treat to get the care package and it was exactly what I needed even though I never would have thought to ask for something like that.  I was really touched.  Having the afternoon to nap and a place to get away to were awesome, too.  There’s not much people can do for me, but I’ve learned that the thing I appreciate most is time.  Time to rest or time to have with my family.

If there is someone you know with a chronic disease and you are trying to think of something you can do for them, I highly recommend doing what you can to give them some time and even cards like the one I got.  “Get well” cards don’t work for us because these diseases aren’t curable (yet).  A “stay strong” or “we’re thinking of you” card is perfect and the more you can do to give them time they need for other things, the better.  I love that I’ll have a gift card to grab the next time I am too tired to make dinner.  I can order in a pizza or go out if we’re up to it.  I love that I have a gift card to a chocolate store so that I can get a chocolate fix the next time I get news that isn’t so great.  I also love the bookstore gift card because it will make me take time for me, which I don’t do often enough.

I’m so grateful for such awesome friends and family.  I’m really fortunate.

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