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.

November 23, 2010

My Annual Fall Fall

Filed under: Uncategorized — by mseds @ 8:47 pm
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Fall would be my favorite season, but for some reason my health declines each autumn.  From 2001 – 2008, my optic neuritis would come each fall and be gone by spring.  Starting in 2008, it stopped going away in spring, but since then I get pain behind my right eye in November.  Also, I get awful acne, apparently from my rosacea, but I’m not convinced that is the cause.  Over the past month or so, I’ve felt the benefits of my CCSVI angioplasty slip away.  My hand strength is declining and my fatigue is increasing.  It’s pretty discouraging.  I had another Doppler ultrasound to see if my jugular veins are still open, but won’t know the results for a couple of weeks as the doc is away from the office.

I can’t figure out what it is about fall that brings about a decline in my health.  What is it about this time of year that throws my body for a loop?

October 24, 2010

Tucks – A Rebif Tip

Filed under: Uncategorized — by mseds @ 8:29 pm
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I’m so sorry I’ve not written much lately.  I’m quite far behind in things I’ve wanted to post.  I got a great tip about Rebif site reactions that I just had to pass along.  If your injection site gets red and itchy, get Tucks pads and rub it on the spot.  It stops the itching immediately for me and keeps the itch away.  It’s the only thing I’ve tried that works for me, so I had to share this tip!

September 8, 2010

What’s one more pill?

Filed under: Uncategorized — by mseds @ 9:46 pm
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I used to hate swallowing pills.  I think that’s why I avoided vitamins for so long.  Then came injections for my MS.  After Copaxone and now Rebif, what’s a few pills?  My New Year’s Resolution was to start taking a multi-vitamin every day.  So far, this is the only New Year’s Resolution I’ve ever kept.  I added extra Vitamin D to that routine, so I now take 3 pills every day.  On Rebif shot nights, add to that 2 Aleve.  I’m up to 5 pills some nights.  So, what’s one more?

I recently read about Vitamin B12.  Until learning about CCSVI, I never would have thought to look into B12.  The more I learn about MS and CCSVI, the more it occurs to me that we need to be looking at the whole body.  MS is a complex disease and cannot be looked at through the narrow Central Nervous System lens.

Symptoms of a Vitamin B12 Deficiency are very similar to MS symptoms.  Per Wikipedia:

Neurological signs of B12 deficiency, which can occur with or without anemia, include sensory disturbances (due to damage to peripheral nerves caused by demyelination) and irreversible nerve cell death. Symptoms include numbness and/or tingling of the extremities, altered proprioception, impaired sense of smell, loss of appetite (anorexia), disturbed coordination and, if not treated in time, an ataxic gait especially in the dark when there is less visual reference[2]. In extreme cases, B12 deficiency can lead to a syndrome known as subacute combined degeneration of spinal cord.

B12 deficiency can also cause symptoms of mania, psychosis, fatigue, memory impairment, irritability, depression and personality changes.

Not all of these symptoms overlap with MS, but the majority do: fatigue, depression, sensory disturbances, demyelination, tingling of extremities, and so on.  Neurologists are just recently starting to talk about the importance of Vitamin D, but why on earth are they not mentioning B12?  My suspicions about neurologists continue to grow.  Why is it that the are so quick to prescribe expensive injections and other medications when something as simple as popping vitamins isn’t even mentioned?  It’s completely frustrating.

I’ve also learned that B12 plays an important role in anemia.  I’ve always just thought that was iron-related.  I’ve been anemic my whole life (I haven’t eaten red meat since I was 12 and rarely ate it before then.)  Every blood test I’ve ever had has shown that I’m anemic.  While pregnant I was told by my OBGYN to take iron, but no one ever mentioned B12.  At least the OBGYN was willing to discuss vitamin supplements, unlike my neurologists.  Dr. Specialist sees my quarterly Rebif bloodwork results, which always show anemia, and she just blows it off.  Dr. Generalist and my general practice doctor have ignored that, too, even though I’ve specifically asked each of them about my iron levels.  Again, very frustrating!

Speaking of anemia, from what I’ve read, B12 deficiency can occur with or without anemia, so you can’t only go by your regular labwork reports.  It looks like I am going to have to ask them to specifically check my B12 levels.  Not that I want them to take yet another vial of blood, but it seems that this information would be at least as critical as knowing whether Rebif is killing my liver, right?

The more I search on the benefits of B12, the more blogs and other websites I find that talk about the relationship between B12 and myelin.  Wikipedia has an interesting scientific explanation about the relationship between myelin and B12.  It’s a bit over my head, but still worth a read.  I wish I would have come across this information sooner.  I wonder what else is out there that is so painful obvious and simple to address that I’m missing because I’m not informed enough to know to go look for it?  If it wasn’t for my mom-in-law mentioning B12 and sharing an article, I never would have thought to Google it in the first place.

In honor of the Jewish New Year, I’m adding onto my New Year’s Resolution and adding B12 to my routine.  I hope B12 is as great as Vitamin D has been.  I’ll keep you posted!

August 20, 2010

CCSVI – 3 Weeks After Angioplasty

Filed under: Uncategorized — by mseds @ 4:07 pm
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I must admit that today is the first day I’ve felt exhausted.  However, given the day I’ve had, I think anyone would feel exhausted, so I’m trying not to read anything into this.

The day started with Little Sister waking up with what seemed to be a couple of sores on her left arm that didn’t look right.  They seemed to have pus in them.  She complained that they hurt.  Her skin looked irritated, so I covered two spots with band-aids and called the doctor as soon as they opened.  I swear calling the pediatrician for an appointment is like trying to get concert tickets before the Internet.  I managed to get one of their first appointments, so we got ready for the day and rushed out of here.

While at the doctor we talked about her various skin problems.  She’s only 6, but psoriasis and it’s been pretty bad this summer.   Hydrocortisone  cream 2.5% seemed to clear a lot of it up on her back, neck, front, and arms, but it still looks bad behind her ears and on her belly button.  She has terrible cradle cap on her scalp, too.  We’ve been using Head & Shoulders every other day this week, but no progress yet.  So, we had a long discussion about Little Sister’s skin and will be going to the dermatologist in a few weeks.  The doctor managed to clean off the gross looking areas on her arm and eye lid.  I wasn’t about to chance that at home and thankfully the doctor didn’t think I was crazy for not attempting that before calling.  There’s a good chance that they were just boogers (go figure), but she said that they hurt and I wasn’t about to question her.  It’s really hard to know what physically hurts her and what is a sensory reaction.  I swear if you put fake blood on her skin when she wasn’t looking and then she noticed it, she’d say it hurt and would cry.  If even the slightest thing looks wrong on her body, that’s just as bad as something actually being wrong.  I still don’t understand sensory processing issues, so she throws me for a loop every now and again.

After that we headed to camp and of course encountered road closures along the way.  It’s nice that they are fixing our roads, but driving around the area right now is challenging.  Thanks to the GPS, we only drove around an extra 10 minutes.  As soon as I dropped them off and was glad to get back to work, I remembered that I had to get to the dentist!  I was so focused on my daughter that I forgot about me.  At least I remembered with 45 min. to spare before having to leave.

Things went well at the dentist.  I needed 2 fillings, both on the right side, but top and bottom which required 2 separate shots of novocaine.  He apologized for the pain and I said it hurt less than my Rebif shots.  I think this is the first time I’ve had dental work done since starting any of the CRAB drugs.  It was kind of shocking to realize that novocaine hurt less than Copaxone or Rebif.  We had a nice discussion about how there needs to be pills for MS treatment and branched into a discussion about how messed up it is that pharmacuital companies aren’t in the business of helping people, but are all about their profit margin.  It was a nice way to pass the time.

I left the dentist with the whole right side of my mouth and most of that side of my face numb.  If that wasn’t enough, I’ve been having MS problems with my mouth again.  This week was the first time I’ve noticed this in a while and certainly the first time since angioplasty.  My upper lip, left side gets pins-and-needles that come and go.  This week I’ve noticed that this part of my lip hangs lower than the other side, although not consistently.  I called Dr. Generalist earlier this week and we decided that monitoring it was the best approach at the moment.  I don’t see any reason to go on steroids for this.  My MRI in June was clean and I don’t have any other relapse signs.  The only good part about all of this is that I could justify a Rita’s Gelati for lunch.  Yum.

The moment I pulled into the driveway, my cellphone rang.  It was camp.  I needed to bring Big Sister a change of clothing.  Lovely.  Just what I wanted to do was another trip to camp.

I managed to put in another hour of work before going back to camp to pick the girls up for the day.  Now I get to make dinner (as soon as I can feel most of my mouth again) and wait for Little Sister’s new DAFOs to be dropped off.

What I really want to do is crawl into bed.  But, that’s not quite an option yet.  I can’t wait for my husband to get home from his business trip.  I handled the rest of his trip just fine.  I was proud of how much energy I had and that I was doing things so well.  Then today came.  I need to remember that opening my veins didn’t make me superwoman.  It certainly helped me a lot, but I shouldn’t expect to be invincible.  I think anyone would be tired after all of this and I just need to keep reminding myself that even typical people become exhausted every now and again.

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 4, 2010

CCSVI – A Few Days After Angioplasty

Filed under: Uncategorized — by mseds @ 8:34 pm
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I had intended to try to write every day, but have been quite busy and have had less time at my laptop than I expected.  Day 2 after angioplasty brought a trip to a new children’s museum with the family.  I walked around all afternoon, making myself sit down every now and again so that I wouldn’t push it.  I would have felt even more fantastic if it wasn’t the day after a Rebif shot.  I’ve decided that my Rebif side effects are even more annoying now that I know how good I can feel.  Rebif side effect on an already worn-out me were annoying, but they are far, far more annoying on the new me!  Although I take Aleve before my shot, when I stay up too long after my shot, I get the chills, my teeth chatter, and I feel awful.  This was the case Saturday night.  I’m so used to my fatigue sending me to bed early and have basically forgotten what the signs of “normal” tired feel like.  I did my shot at my regular time, but was so awake that I stayed up until 11:30.  Then I was suddenly nauseous (that was a new thing) and had the chills!  Whoops.  Note to self: ensure to go to bed within 1.5 hours of doing the Rebif shot.  I was nauseous again in the morning in addition to my normal fever of around 100 degrees and feeling achy and worn out.  Post-angioplasty is the first time I’ve ever had nausea as a side effect.  Lovely.

Okay, enough venting about Rebif and back to how great I feel otherwise.  Since angioplasty, I’ve had much more energy, my hand and arm strength have improved, my appetite has significantly decreased, and my sense of smell is far better than it’s been in years (yes, I know, that’s strange!)  Don’t get me wrong, I still get tired.  I was yawning away this afternoon.  I was hoping that my incessant yawning would go away after angioplasty, but it hasn’t.  It’s decreased, especially the first couple of days, but it’s apparently not gone.  I’m trying not to read anything into that!

One of the best things is that my stress is gone.  I’ve been feeling some level of stress since I first found out about CCSVI.  First I couldn’t wait to find out what my veins looked like.  This past April I finally got that answer.  Then I was stressed about finding someone to fix them.  Now that they are fixed, the stress is gone!  Sure, I’m a little worried about when/if they are going to close again, but for now I am really enjoying my victory.

I was quite interested to see how my neurologists were going to react when I told them I had angioplasty.  I know neither of them is on board.  Today was my six-month check up with Dr. Generalist (my local neuro.)  As I was sitting down in his office he asked me how I was feeling and if anything was new.  I opened with, “I had my veins fixed,” and he looked at me curiously.  I went on to tell him the story and about how great I was feeling.  Much to my surprise, he didn’t have a negative reaction.  He actually seemed interested.  I was his first patient who was persistent enough to not only do the research, but to do something about it and he was impressed by that.  I don’t think he’ll be sending patients off for angioplasty any time soon, but I think he’s going to be open minded and follow the research and how I’m doing.  I can live with that.

He also gave me a tip about managing Rebif side effects.  I’ve only been taking 1 Aleve (220mg) before a shot.  He said to try 2 Aleve one hour before a shot and to take another Aleve if I’m up in the middle of the night (which of course I am because I drink so much water before a shot that I have to pee by 4 a.m.!)  I’ll let you know if the extra Aleve helps at all.  Since he seemed to be in an open-minded mood, I decided to push it and asked about LDN.  I got the same response I got from Dr. Specialist — some seem to do well on it, but there’s no scientific proof, so I’m not on board with prescribing it.  Oh well.  One battle at a time.

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