Life with MS & EDS

December 13, 2012

White House Petition on EDS

Filed under: Uncategorized — by mseds @ 8:03 am
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The other day I stumbled upon a petition regarding Ehlers-Danlos Syndrome on the White House’s petition site.  If you live in the U.S., please sign it to help us raise awareness and recognition.  Thanks!

August 3, 2011

EDS Confirmed

When Little Sister was diagnosed with Ehlers-Danlos Syndrome (EDS) the summer of 2008 I was very focused on what that meant for her and to a lesser extent me. One of the first things I did for me was try to find an adult doctor so that I would have someone following my progress. However, the doctor I found at the University of Pennsylvania said he disagreed with my daughter’s doctor and said I didn’t have EDS since my skin was not stretchy. This was despite the fact that I bend in ways most adults cannot. I can put my legs over my head, I can bend my thumbs to my arms, and I can hyper-extend most joints on my body.  I have a classic “cigarette paper” scar on my leg. Those were the most obvious thing, but as a doctor he probably should have picked up on more things.  A few months later I received my MS diagnosis and that has occupied most of my time from then forward.

That all changed during my CCSVI angioplasty this past March. After the procedure, I had what seemed to be a dysautonomia reaction when the sheath was being removed. That freaked me out a bit and made me focus on the EDS side of things again. Thankfully Dr. Sclafani had an EDS doctor to recommend. I called her and four months later got to see her.

I highly recommend Dr. Francomano in Towson, MD. That was possibly the best doctor’s appointment I’ve ever had, and I’ve had a lot of them. She had reviewed the 30+ page questionnaire I completed and the test results she requested. She did a thorough examination. She noted all of the things I expected her to find and plenty more. I learned that my knees go 20 degrees past straight, that the whites of my eyes are quite grey, that my shoulders have hypermobility, that my feet are flat (but only when I stand), that my pinkies extend past 90 degrees, many of my reflexes are 3+, and several other things. I learned that my crumpled ears are an EDS thing, too. She respectfully disagreed with her colleague at Penn and confirmed what I already knew; I have EDS.

Next I need to learn more about how to manage my health. To ensure she puts me on the right path, she ordered several tests. I need to do a Tilt Table study to figure out my blood pressure drop problems and the dysautonomia. I need to have an upright MRI to check my disks in the cervical spine while looking straight ahead and then looking down to see if there’s any disc damage that would explain the hyper reflexes. I need to do a sleep study to figure out if I’m getting enough REM sleep. Lack of REM sleep could explain my chronic fatigue and insomnia issues. I’m also going to get another echocardiogram to serve as a baseline. I don’t have the results of the one I had in 2008 and haven’t been able to track down the results. Lastly, I’m going to have orthotic inserts made for my shoes. Little Sister has DAFOs (actually she’s graduated to Sure Steps) that extend past her ankles, but the doctor thinks I’ll be fine with just a shoe insert. The hope is to keep my ankles from collapsing. Hopefully all of this won’t cost a small fortune!

One of the most interesting things to me was her interest in the connection between MS, EDS, and CCSVI. It seems that more and more doctors are starting to connect the pieces and looking outside of their small boxes.  Cardiovascular health has long been an area of focus for EDS doctors, but until now they have focused on the heart’s valves and arteries. However, if there are issues here, why couldn’t there be problems with the veins? Veracious veins are a known issue with EDS, so why not explore our other veins? It’s an exciting time to have these diseases. Hopefully doctors will start working together in an interdisciplinary way and begin to connect more dots. I’m so fortunate to have found doctors like Dr. Sclafani and Dr. Francomano who are the kind of people who will do just that.

Lesson learned: never trust a first doctor’s opinion. My MS diagnosis was delayed by 7 years and my EDS diagnosis was delayed almost 3 years. Go with your gut and continue to seek answers!

March 31, 2011

Allergic to Band-Aids

One of the things I was most worried about during my recovery period after CCSVI angioplasty isn’t something that most people even think about.  I was concerned about band-aids.  I’ve always had trouble with them.  What they do to my skin is usually worse than the wound I’m trying to cover.  During college I had an angioma removed after it swelled and started to bleed.  When I came back for the follow-up, the dermatologist remarked how bad the skin looked from the band-aid and that the area where the angioma was removed looked great. That was the first time anyone qualified actually said I was allergic to band-aids.

I discovered that my skin could generally tolerate just one type of band-aid, Curad’s Sensitive Skin Bandages.  They became hard to find, so I bought a case of them on Amazon, fearful that I’d be stuck using gauze and paper-tape in the future should they ever stop making them.  I’ve tried other brand’s “sensitive skin” band-aids with zero success.

I can use the Curad bandages on my fingers without problems, but it seems that they aren’t quite good enough for other parts of the body.  I came home from angioplasty with guaze and a clear plastic-like cover over the incision site.  I left that on for a few days and then changed over to my Curad sensitive-skin bandages.  That went well for a couple of days, but then I started seeing irritation.  I could start to see the imprint of the bandage on my skin.  The incision hadn’t healed well enough yet for me to feel comfortable going without some kind of covering, so I left the band-aids on.  Stupid decision.  Here’s the result:

Angioplasty incision, surrounded by reaction to band-aid

You can kind of see the outline of the band-aid, even though it’s been off for almost 24 hours.  That looked worse about a day ago.  The lovely rectangle around the incision is from whatever they use to affix the gauze to the flexible bandage.  That part looked even worse last night.  If you look closely at the bandage, you can see a shiny outline surrounding the gauze.

Curad Bandage: Note the shiny area around the guaze

It is the shiny area that made the raw rectangle around the incision.  Lovely, eh?  Yesterday afternoon I changed back to using gauze, but gave up on that and decided it was time to just give up on bandages.  I’m trying to leave it open today, but when a wound is at the very top of your leg, it’s a hard area to air out when it’s 40-degrees outside and I need to be sitting at my desk all day.

I hope one of these days someone will make a latex-free, sensitive skin band-aid that doesn’t destroy my skin.  (Note that the Curad Sensitive Skin bandages are NOT latex-free.  Perhaps that’s part of the problem, but it really does seem to be the adhesive that caused the problem.  It’s hard to tell.)

~UPDATE~

A couple of days ago I spent my lunch break at CVS in their first-aid area.  I looked at tons of various bandage options and decided to try two things.  I bought a box of latex-free fabric bandages as well as a box of gauze pads and paper tape.

When I got home, I put the latex-free bandage on a random spot on my thigh to see what it would do.  So far, it’s red around the outside of the bandage.  While I still don’t know for sure if I have a latex allergy, my skin definitely has issues with adhesive.

On the angioplasty incision, I put gauze and paper tape.  Not only is paper tape really difficult to keep on given the wound location, but the parts that did stick made my skin red!  Isn’t paper tape supposed to be one of the safest things on skin?  Go figure it would be a problem for me!

My husband came up with an idea.  He covered the offending part of the Curad Sensitive Skin bandage with gauze.  Since it takes a few days for the outer edge of those bandages to mess up my skin, we figured this would at least buy me some more time for the incision to heal.  I just wish the darn thing would develop its own scab already.  I’m pretty sure the Lovenox I’m on is slowing the healing process.  It’s been two weeks and the area is still rather raw.  My fingers are crossed that his solution works.

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.

October 25, 2010

Little Sister Update

Little Sister had her six year old check-up.  Going to the doctor with her is always an interesting experience.  I somehow always end up feeling like a bad parent.  It’s weird to nonchalantly respond to, “So, how does she sleep at night?” with responses like, “Great, as long as it is broad daylight in her room.  She can’t deal with shadows, so we can’t dim the lights.”  I’ve lost count of the number of crazy things I’ve said in response to seemingly general questions.  It usually makes me laugh (although I try not to do so out loud in front of the doctors.)  The response to “how is she eating” was not quite as interesting.  I said that most of her calories seemed to be from juice, but we’re working on water.  I think I saw the doctor’s eyebrows rise at that one.  Little Sister chimed in with saying she’ll take a giant sip of water at recess.  I guess that’s progress.  I said that we were still at about 5 foods (mac and cheese, pasta with sauce, chicken nuggets, a variety of fruit, baked or mashed potatoes (that’s a very new addition), and cheese.)  I guess I should have added in jelly sandwiches, cereal, and the occasional waffle, in addition to snack foods.  She asked if we were using nutritional supplement and I said we were doing vitamins.  It seems like we need to consider doing nutritional supplements, like Boost shakes or something like that.  Her BMI about 14, which is at the 15th percentile.   I guess that’s not terribly low.  “Under weight” doesn’t start until 5% or less, according to the CDC.

The one thing that the doctor was not happy about was that physical therapy was dropped from her IEP.  She was quite shocked by that.  I said they dropped it because she was able to get around the classroom and the school.  I explained that we were trying to keep her active in other ways, but that soccer lessons aren’t going well, so we need to find something else to do.  She wrote a firm letter to the school saying that PT should be added back into the IEP or that she should have a medical 504 plan.  Regular PT is an important part of preventing arthritis and other painful complications in folks with Ehlers-Danlos, which she points out in her letter.  I imagine we won’t get anywhere with the school district, but I’m going to give it a try before finding private therapy.  She gave us a list of places we can try outside of the school.  These are the times I’m thankful we have supplemental health insurance for her.

She flat out refused to have her blood pressure taken.  The doctor was really good about it.  She got the manual cuff out and let Little Sister feel it and see what it did, but the tears continued until the thing was securely back in its holder.  That reminded me that we are overdue for her echocardiogram.  I need to book that at a time my husband can come with.  I think it’s going to take both of us to get her to do that.  The first one was soon before her sensory issues reared their ugly head.  I think it’s going to be a huge challenge this time around.  It’s never a dull moment!

Otherwise the visit went well.  It was great to be able to share how well she’s doing in school (except for some of the sensory things and her fine motor delay causing some frustration.)  We absolutely did the right thing in waiting a year before starting Kindergarten.  Her teacher said she’s doing well.  That was great to hear.  Little Sister seems to be having fun and that’s what counts!

July 8, 2010

New Link between MS and EDS?

Filed under: Uncategorized — by mseds @ 10:37 am
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This morning I came across a post at This is MS that discusses a presentation made by Dr. Guilio Gabbiani from the Centre Medical Universitaire in Geneve, Switzerland to a conference in Bologna, Italy.  I wish I had seen this before as it completely changes my perspective on my diseases.

Dr. Gabbiani took five specimens from internal jugular vein tissue removed by Dr. Zamboni from patients he treated endovascularly from areas not damaged by angioplasty and compared them against healthy control tissue.  His finding: MS patients had significantly more smooth muscle cells than the non-MS controls.  He found that there are less Collagen I type fibers and more Collagen III type fibers in MS patients.  It is thought that the connective tissue in MS patients switches from collagen I to collagen III.  Apparently it’s known to happen in the arteries, but finding this in the veins is a new discovery.  This could be a critical finding for CCSVI!

During the EDS diagnosis process, I learned that one of the major concerns that needs monitoring is cardiovascular health.  I’ve had an EEG for a baseline and so has my daughter.  I was told to get her EEG done every three years and annually during times of rapid growth (puberty.)  I thought of this in passing when I first heard of CCSVI and when I found out that my jugular veins are constricted.  Somehow the link didn’t set in until I read about Dr. Gabbiani’s findings.

It makes complete sense that my vein problem could be related to my other connective tissues issues.  How amazing would it be to find out that my MS is even more related to my connective tissues disorder than to an auto-immune disease?  I think there is a ton of research that needs to happen in this area, although I’m skeptical it will ever get funded.  I’m on a mission to find a doctor who knows about EDS and vascular surgery.  Since EDS already has a known vascular connection, I think this will be a much better avenue for me to pursue than talking with neurologists, who are obviously dead-set against discussing CCSVI with me.  I’ll let you know if I have any luck!

June 8, 2010

Kinesio Tape – Ankles

Filed under: Uncategorized — by mseds @ 8:50 pm
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When Little Sister was about a year old, her physical therapist had just taken a course on kinesio tape (a flexible, cotton strip with a very mild adhesive.)  We decided to try it on her stomach to see if it would help improve her muscle tone in her abdomen.  While it took a while for her to be able to sit on her own, we knew the kinesio tape was helping.  It was the strangest thing, but it even helped her constipation problems. We continued taping for about a year.  I got really good at taping her stomach.  We even used it on her legs.  Once she started moving around on her own, we stopped using it and threw the remainder of the large, expensive roll of tape into her closet.

I was looking in her closet last week and noticed the tape sitting on the top shelf.  I got to thinking.  What if kinesio tape could help my collapsing ankles?  I had the tape.  Why not give it a try?  So, I brought it with me to the chiropractor this week on the off chance he knew something about it.  Thankfully he did!  He taped my ankles and showed me how to do it.  He explained that the idea is to run the tape along the muscles.  Strengthening the muscles will help stabilize the joints.  That’s what seems to be a key component in managing Ehlers-Danlos.

The idea is to apply the tape starting at the ankle muscle to stimulate the muscle and run the tape up the leg.  For my application, we cut a strip of the tape approximately 7 inches for the front of my leg and 10 for the back of my leg.  Cut the strip down the middle, but keep the bottom 2-3 inches intact (see the picture below.)  Pull the backing off the tape from the bottom part and place it on the achilles part of the back of your ankle (you may need someone to do the back part for you, but the front is easy to do on your own.)  Then peel the backing off the cut strips and run them up the legs as shown below.  Make sure the tape is smooth.  You don’t want any bumps. For the front, place over the muscle in the front of the ankle.  Follow the nevicular (the nobby part on the outside of your ankle) around to the front of your foot.  The bottom of the tape should be slightly below there.

The down side of the 5 year old tape I have is that it’s not very sticky (not that kinesio tape is particularly sticky to begin with.)  This is great for my extremely sensitive skin, but it peels off pretty quickly.  I expect to be doing the taping every 1 – 2 days.  It’s easy to do, so I don’t mind.  I hope it will be worth it and that I’ll be able to walk around without my ankles giving out.  I’ll let you know if I see any improvement!

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