Life with MS & EDS

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.

March 8, 2010

How to Spa with MS and EDS

Last week I was on a fantastic business trip in AZ.  Since I telework, it’s great to get to see my team, but it’s even nicer in a beautiful surrounding.  The resort and the views were amazing!

While I was there, I treated myself to a spa appointment.  Their list of services was so fantastic that it took me about 3 weeks to decide what to do.  I couldn’t fit in more than an hour, so that limited things.  I also knew I couldn’t take advantage of their hot tub or steam room, not without risking an MS flare-up (heat like that messes up my optic neuritis.)  I used to love to have facials, but rosacea has made those tricky and I wasn’t up for chancing it while on a business trip.  That narrowed the list down to massages and wraps.

I decided on a hot stone massage.  In general, it was quite nice.  I tend to get cold easily, so the hot stones were nice.  There’s something comforting about laying on a row of warm stones and having more piled on top of you.

At the start of the treatment I told the lady that I had MS, but didn’t mention the EDS.  I usually don’t unless someone really needs to know because it takes too long to explain.  Given that my symptoms are pretty low, other than the heat with MS, I hadn’t really thought of how a spa appointment would affect either the MS or the EDS.  I soon figured it out.  The problem was with the use of the stones during the massage.  My left shoulder blade area is bruised.  I guess anything even slightly deep tissue is a bad idea!!!

Lesson learned.  I think I’ll try a wrap next time instead.

November 4, 2009

Good-Bye Trial, Hello Rebif?

Last week I saw Dr. Specialist. Our discussion started out with, “I don’t think it’s a good idea for you to go without treatment for three months,” which is what I’d have to do to be part of the trial. I responded with, “So, I guess you have the MRI results,” which she did. It was a mixed picture.

The good news is that my upper spine is looking better, for the most part. The lesions in the cervical spine demonstrated either a “mild decrease in expansion” or were stable. Some decreased in “conspicuity” however one was more “conspicuous” than before (meaning they can see the lesion more clearly now.)

Moving further down the spine, the news got worse. Multiple lesions are stable in the thoracic spine, but there is new enhancement and extension of the lesions at T9-10.

The theory is that Copaxone isn’t working. Dr. Generalist would say that it’s too soon to know this, but I’m siding with Dr. Specialist on this one. I’ve been on the Copaxone since early February and seeing a new lesion and increased enhancement in October cannot be a good sign.

After this lovely discussion I got to do the standard “drunkard” tests. I can still walk a straight line, walk on my toes, walk on my heels, touch my finger to my nose and then her moving hands, see the correct number of fingers, etc. There was a medical student with her during the exam which was interesting. They were both fascinated at how far up I was able to get my feet when walking on my heels. We then had a nice discussion about Ehlers-Danlos and I was able to help education the med student. It almost seems as if the Ehlers-Danlos symptoms are making having MS easier than it would be otherwise. I don’t have the spasticity symptoms that can accompany MS. I may have poor balance, but my bendiness keeps me from falling over. I’m not sure there is any medical evidence behind this, so it’s just an observation on my part.

If I failed any of the drunkard tests, she didn’t mention anything. I’m pretty sure the only part of the exam that showed anything was the eye exam. I can still read the 20/20 line without glasses, but my right optic nerve is still pale and my color vision in that eye is still decreased. I’m pretty positive this is a permanent condition at this point. It’s generally not annoying, except that I’m having a hard time getting used to taking pictures with my left eye (I know, I should use the screen on the digital camera, but there’s still something about looking through the view finder that I can’t give up.)

We then talked about next steps. I need to get the brain MRI since I won’t be doing that as part of the study. That’s scheduled for next week. I don’t think they’ll find much. MS seems to be eating my spine, not my brain. Once we have those results, we’ll talk about whether or not to do a course of IV steroids again. I really hope to avoid that. We’ll also have a talk about switching off Copaxone and moving over to Rebif.

I’m less than thrilled about the idea of switching to Rebif, but when comparing the side effects of the interferon drugs (e.g., flu-like symptoms, potential liver damage, etc.) against the continued degradation of my spine, I think Rebif comes out on top. It’s only 3 times a week, so at least I will have less shots! There’s a positive part, right? Also, since I won’t get to do the study, I get to keep my Mirena (yeah!) I’m trying to look on the bright side. I have way fewer symptoms than I probably should have given the number of lesions on my spine and if starting Rebif will help fight the progression of my MS, I’m going to give it a try.

July 29, 2009

Making Promises

My girls were schedule to have their first swim lesson yesterday afternoon.  Neither knows how to swim and both are terrified about the idea.  Little Sister had some exposure to pools when she received water therapy.  Her occupational therapist was awesome and actually got her to go under water a few times.  But, the relationship between the hospital and the pool wasn’t going well.  We’d show up and the facility wouldn’t have the appropriate chemical levels in the pool or something else would go wrong and we’d have to leave.  Do you know how hard that is on a little kid who got psyched up to do something and thought she’d have fun, only to see the pool and be told you can’t go in?  Or how hard this is for the mother who got her daughter all ready to go, including picking her up early from school and driving 30 min. to get there?  After this happened a few times, we ended up on land for the rest of those O/T sessions.  Taking a gamble on the pool just wasn’t worth the potential disappointment.

It’s been about 18 months since Little Sister had a chance to do much in a pool.  We’ve been to a couple of pool parties, but it’s hard to find a pool warm enough for her to go into.  She turns blue very quickly.  A few months ago her school had a pool party at a warm water pool that is on the location of her day care site.  My husband and I got to chatting with the lifeguard who mentioned they did swim lessons.  It’s a senior citizens’ therapy pool, so they keep it warm enough for her.   Heck, I’d love to use it!  The water is kept around 90 and the air temperature was in the high 80’s.  I know warmth and MS are not a good mix, but also having EDS throws a wrench in what makes a perfect temperature.  The pool I used to exercise in was kept too cold for my comfort.  I’d also be blue after a while and my toes would cramp up so badly I’d have to call it quits.  But, back to the point…

I called the pool just after the party, but the two instructors were not available and I was told to try back in a couple of months.  So, I called again a couple of months ago and didn’t hear back.  I’m sure the voice mail wasn’t received.  I called back just recently and got the names of the two instructors.  I called the first and she was able to do four semi-private lessons with us. She could even do one before we left for Disney (where we’d have a pool at the rental house for a week for them to practice and get more comfortable.)  AWESOME!

Yesterday Big Sister comes home from camp and we rush to get her ready for her lesson and head out to get Little Sister.  Big Sister was so incredibly excited.  She even made a picture for the teacher instead of doing free swim at camp that afternoon.  She also admitted to ducking swim lessons at camp in favor of a different sport instead.  But, she was excited to learn how to swim and even promised to try to go under water (the theme of her picture).  We hurry over to daycare and rush Little Sister out the door.

We drive around to the other side of the building, not wanting to have to walk through it all wet on the return.  We go in and pay for the lessons and head off to the locker room to change Little Sister.  I think I got a funny look or two from the older ladies who realized I was still changing diapers on someone her age, but I just smiled and kept moving along.

Then we had out to the pool.  A couple of women were doing laps, but no sign of the teacher.  A gentleman was cleaning the deck, so I asked him if he know anything.  He was very nice and made a call, but didn’t have any indication that the woman was coming.  I had already left her a voicemail message from my cell, but she didn’t call back.

So, after waiting for 15 minutes, we gathered our things and the girls began to cry their little eyes out.  I felt so bad, but I was also really, really angry.  People really shouldn’t make promises to kids and then not follow through.  The girls cried the whole way home.  I had them keep their suits on, so they hopped into our oversized tub when they got home, but that wasn’t the same.  We felt so bad that we even got them McDonald’s for dinner.

I sure hope the girls are willing to give this another try soon.  I’m not giving up until they are comfortable around water.  I love to swim, although I rarely get to do so.  I can’t wait to have access to a pool for a week.  I hope to be able to teach them a little bit this week and hope that their cousins, who love to swim, will rub off on them and teach them a trick or two.

July 21, 2009

Reality

The past several weeks have been pretty decent.  I finally felt the positive effects of the lovely Solu-Medrol steroid experience.  Still being awake at 11 p.m. as opposed to exhausted by 8 p.m., not having any numbness in my left arm, and having still lips was worth it.  Never thought I’d say that!  Lack of exhaustion was certainly the best part of things.

Life has been keeping me pretty busy and certainly quite occupied.  The girls are having a great summer and we’re getting down the shore pretty often.  As a full-time teleworker, I’m fortunate that I rarely ever have to travel.  However, the past 4 weeks brought 2 unexpected trips.  One was for training in Baltimore and last week I ended up in Chicago for a great meeting (yes, surprisingly those do exist.)  It was my first time flying with Copaxone.  I put everything into that blue plastic travel case, shoved it into my laptop backpack and off I went.   At the security check-point, I unloaded the blue box along with my laptop, BlackBerry, iPod, and shoes (thanks a lot, shoe bomber, for making me have to stand where thousands of other people have stood without their shoes on – yuck) and through the metal detector I went.  As I was walking through, the TSA guard asked what was in the box and I said it was my medication.  He said I didn’t have to put that through separately.  Nice to know, but it just seems safer to pull it out than to have them wonder what these pre-filled needles are on the x-ray monitor.   I took it out on the return trip, too, although those people didn’t say anything.

Later this month we’re taking a family trip to Disney and I cannot wait!  I’m concerned about the heat as well as how much walking Little Sister will be able to do.  To test things out, we didn’t take the stroller on the boardwalk this past weekend.  She made it about a mile before she started complaining.  My husband, complete with a very  sun-burned back, had to carry her home the last 3 blocks.  This was without her DAFOs and with little stopping.  I can’t imagine that we’ll have an uninterrupted mile+ long walk while in Disney, so I think we’ll be okay.  I’ve built in break time and will arrange for shows, longer rides, etc. to split things up.

Planning these trips has been a nice diversion.  I’m also hosting a birthday party for my best friend 2 days after we return from Disney.  Having things to plan is a great way to occupy time.

Yesterday also brought great news!  When we moved here a few years ago, my work was stable, but my husband has been dependent on contracts, which have been slow coming the past 2 years.  After a bit of a drought, he got a great contract about 2 months ago.  It was fantastic to know that things would be steady for the next 6 months.  Never in a million years did we expect he’d get a call last night with an offer for a full-time job!  It’s also full-time telework with minimal travel!  We are so fortunate.

So, as you can see, things have been going pretty well.  Aside from that strange instance of vertigo and my eyesight not improving, health-wise things have been unremarkable.  I’ve been a bit more tired lately, but I’ve also been very busy.  I’d like to blame it on that and not the effects of the steroids going away.  I don’t want to do those again anytime soon.  Even my hip, which was giving me a lot of pain when walking long distances, has been great!  Walks on the boardwalk used to do me in, too, but I think the monthly chiropractor appointments are really helping.  It’s strange how being in alignment makes such a difference.

Reality has sunk in that I have MS and that’s just the way things are.  This was my primary focus for so many months.  It’s nice to have these other things to concentrate on now.  I suppose I’ve reached the “acceptance” phase.  Reality did creep up on me last night though when I was doing online check-in for the Breast Cancer 3-Day.  Phase One includes a medical questionnaire.  For the first time I had to check off “other” and put in not only Ehlers-Danlos (which was new last year), but also “Relapsing Remitting Multiple Sclerosis.”  Honestly, I don’t think I’ve ever written that out before.  Heck, I never even spell out MS anymore.  I found myself checking the spelling to make sure I had it correct before hitting submit!

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