IVIG and MS - Plasma for one

I recently had an IVIG infusion and got a lot of questions about what IVIG is and how it is used in relation to Multiple Sclerosis.

Great questions. 

I'm not entirely savvy on IVIG usage medically, but I can give a non-technical little overview.  With the help of google and some medical documents of course.

So first, why we choose to use IVIG.  In my DMD history I've used Rebif, Tysabri, Tecfidera, and Rituxan.  I have also used Plasmapheresis as a treatment.  Rituxan was my latest DMD and I really did give it a good try.  My body has a hard time with all drugs but rituxan, damn, it was brutal.  Quality of life was not worth it.  And, we couldnt confirm if it was or was not working.  It was an easy decision for me to be like "no thank you, no more".

I went with no DMD medicine or treatments for 10 months and though I wouldve loved to go further, my doctors advised me to consider a treatment.  I agreed.

I received IVIG at my MS clinic's infusion center at a hospital in downtown Pittsburgh.  The nurses were fabulous and got a IV line in one try. I love nurses!

MRI's - tips and tricks for the chamber

MRI - a torture chamber for multiple sclerosis patients.

Just kidding.  Kind of.

Technically, a MRI is a chamber tube that uses magnetic fields and radio waves to develop a picture of a human's insides.  MRI's of the brain, cervical spine, and thoracic spine (brain, neck and back) are taken at various times with MS patients to look specifically at the central nervous system.  For those with MS, MRI's will show white spots that indicate a lesion.  These white spots, lesions, are places of the nervous system that have been damaged.  (Basically....)

MRI's are not only used as a diagnostic tool for multiple sclerosis, but also as a tool to determine the progression of the disease.  If a patient is presenting new or increased symptoms, a MRI will usually be ordered to determine if there is activity present.  

Here's how the MRI actually works:

"OMGGGGGG" - a new post

OMGGGGG

The sparkled life blog is back!

But wait...didnt I swear off writing and blog posts February 2016?  Isnt the previous post titled "the last post"? Are we trying to make blog writing happen again?

Yes, to all the above.  

I had sworn of writing on the sparkled life.  Why?  It got too difficult.  I needed a break.  My finger muscles contract making typing difficult.  I didnt want to be known as the "the girl with MS".  I felt I had nothing more to say.  And on and on and on. 

Recently I was at my neurologist where there was a new patient, a woman my age.  She didnt look scared but she did look overwhelmed.  It took me back to when I was first diagnosed and how I had wished I had someone to tell me it was all going to be ok.  

That's why I started this blog in the first place - because I had searched for someone, anyone, with a "story like mine" and couldnt find one.  All I could find on MS were stories from people with less hard symptoms like a numb thumb (any symptom is challenging but where were the people who could no longer walk/talk/use their arms?!?!?) or kids with info on how they "healed" their ms with witchery.  

So, I thought, "hell, I'll write the story".  

That was a while ago.  And I had forgotten that flame, that ambition, until I saw this girl the other day.  I so wanted to go up to her and tell her its going to be ok, that she was going to get through this, that it was going to hurt, it was going to be a bitch, but she was strong and was going to make it. 

Butttttt you cant really do that in doctors offices.  

Instead, that fire ignited in me again.  I thought about all the lessons and mistakes I've gained in the past 5 years since diagnosis and how they just might be able to help others.  And maybe, that girl will get a random facebook message from her aunt with a link to this blog.  And she'll be comforted that shes not alone.  

And that's why Im back.  (:

Diplopia - A Funny Word for Pirate Life

I dont even know how to tell the story of my life the past week because it seriously seems made up, it's that crazy.

Crazy, dramatic, unnecessary, and all other words that would fit in those catagories.  

The hospitals, clinics, drs, research facilities, MS society...they all express the necessary life function of keeping your stress levels at an all time low.

At first, this was one of the hardest things to achieve as I had a stressful life.

But now I can say with no hesitation that my life, even with this crazy disease, is (mostly) stress-free.

The stress that I do find comes from: hospitals, clinics, drs. research facilities.  Do we see the irony there?

I'll summarize:

After numerous attempts to contact my MS specialists office (a MS nurse, a PA, someone!!), I received a phone call from the answering service saying that the office would like me to go the ER. 

I had been told the evening prior that I should go to the ER from a resident.  But was hoping my speicalist would provide better news because I am not a lover of hospitals. 

But now it looked like that was the option.  So we went. 

The morning of as I was getting ready I was mentally preparing myself for the ER craze.  ER's have been a chapter of the most awfulness in my past and I was concerned about that day's adventure.  I was hoping for a quick, concise, ER trip. 

And then I stop, saying to myself "hell, Eliz, the chances of that happening are slim to none.  Let's be real."

Then I "hear" the voice of God say "if you dont believe in miracles, they arent going to happen."  To which I replied "JK totally believe!! Please let it come true!!"

And you know?  It did!  The had me in a room and hooked up even before my mom parked the car.  They were nice and compassionate and even entertaining (who knew!).  They even got a vein in one stick (this NEVER happens). 

I went for a brain and optic nerve MRI (if you've never had a ON MRI, it's pretty intense.  The pounding of the MRI is right there on top of your eyes and you have to keep them shut the whole time). 

Results came back and the ER dr and the radiologist confirmed some bad news: three new lesions, one of each optic nerve (left and right) and one in the cerebellum.  They were sending down neurology and I should prepare myself for being admitted for a few days.

Neurology came down, confirmed the MRI, did the exam.  We talked about options, how steroids were out since I dont respond (this is now very purposely written on my file at UPMC.  Thank goodness.  Dr's have an easier time reading files than believing patients.  Go figure).  We discussed potentially doing plasmapheresis again even though I just went through 5 rounds a few weeks prior.  It was very calming and we even discussed some of my other questions that I have (like the whole parkinsons disease issue) and how this could be addressed during my time. 

Neurology left and though I was disappointed about staying in the hospital, I felt like I was being listened to, that I was being heard, that I was being a part of the deciding situation. 

(Of course I stuck to my hospital uniform: t-shirt, leggins and toms.  Hospital gowns are not for the experienced).

And then it all changed. 

ER resident came in and said my Specialist wanted me sent home, with no treatment, and he would see me tomorrow morning.  

Im sorry?  We were all on the same page that this was serious, that action needed to occur.  But now the great MS Specialist (who doesnt even practice in the hospital) says to order me home and no one has authority to tell him no?  

"Uh yeah."

Can I get a second opinion?  blah blah blah

"Um no.  Not in this hospital."

#awesome

I'll spare my thoughts on the negligence of this situation. 

I went home and while I was happy to be in my own bed and not the hospitals, I was also concerned.  This was serious.  And I felt like I was being pushed into a closet.

The next morning I met with my MS specialist.  I left the office with no answers, no apologies (lots of excuses/explanations), and no plan of immediate action.  

My best option is to retrain my brain / eyes how to see.  I've retaught my legs, arms, speech, etc.  I can do this.  It just means the pirate patch might be around for a bit.  

And there is still the overall concern with how/why this is happening and so quickly.  But I cant think about it because there are no actions to take at this time.

However, if I may hint, I do have a big appointment in August with a dr who looks promising.  I have my doubts only because of the past two years history.  

But like what happened explained above, if you dont believe in those miracles, they wont happen.  

So I'm believing.  Im hoping.  Im praying. 

Oh and Im also relearning how to see.  Have I mentioned my body is kind of bad ass?

Keep up the love and sparklers!

Love, Eliz

 

Plasmaexchange 3.0

Plasma-exchange. 

Aka as that time you lose all your blood.

Or rather, all your plasma in your blood.

Back in December 2013 I started to experience severe pain and lack of use in my arm.  I went to my neurologist thinking it was MS.  It wasnt...it was a slipped disc.

After a cervical spine surgery in January and a few weeks of healing, I was doing pretty well.

Until one day the pain and lack of use came back.  I went to my orthopedic surgeon thinking it was another slipped disc.  It wasnt...it was MS.

This back and forth way of living makes me feel like a tennis ball.

On top of all this fun Im experiencing vision issues (blurred vision), which is very common with multiple sclerosis yet something I had not experienced as of yet.  Optic Neuritis is the name.  It was only a matter of time before this symptom jumped up.  

(PS: looking at a computer screen is extremely difficult so please excuse any misspellings and such.  Im writing blind ladies and gents.)

After a meeting with my MS specialist on Monday, we decided to take the route of Plasma-exchange, or in fancy words, plasmapheresis. 

What is common with multiple sclerosis is that when a patient is struggling with a relapse, they will do a round of high dose steroids.  

But we all know I'm not common. (:

Steroids have never helped (or very little) with my MS.  They do a great job at making me irritated and gain weight and have insomnia though.

Because of this, we have sought out Plasma-exchange in the past to help me when my symptoms are high.  This session is 3.0 because I've had it twice before, June 2012, May 2013, and now.  

(We might as well schedule it for next year this time too.  PS researchers...I think this is a sign that the cyclical year has something to do with MS).

What is plasma-exchange?

Well, in my uneducated, non-medical words, you have a needle in both arms, with your arms laid out at your sides.  One of the arm needles pulls out blood (in this arm you wear a pressure cup as well as squeeze a ball for the full time to get your blood pumping), puts it in this big, sometime noisy machine, cleans out your blood's plasma, puts in a mix of synthetic and donor's plasma, passes through a warmer, goes in all this tubing across your body, and in through your other arm.

(the Team Edward shirt was a must...we have to add the humor to life)

It lasts anywhere from an hour and 45 minutes to two hours and 45 minutes.  I do 5 sessions, every other day.

The most difficult part of the process is finding strong enough veins for the needles.  Yesterday's procedure was very successful, with both veins remaining tight the whole session.  Often times my veins collapse but we're remaining positive this round.

So what are the benefits?

According to wikipedia, plasmapheresis is an important use in the therapy of autoimmune disorders, due to the rapid removal of disease-causing autoantibodies from the body's circulation.

In my again, non-medical terms, it gives your body a fresh detox in order for it to heal.  With MS (and lots of other autoimmune disorders), our bodies find themselves under so much stress during a relapse, not providing it an opportunity to heal.  Plasma-exchange gets rid of any bad things in your blood so that your body can focus on what is important at that time: healing.

 It is not a very common procedure in the US (very common in Europe and Japan).  I'm fortunate because UPMC (my hospital network) has a plasma-exchange unit. And even more fortunate, I adore the ladies and the dr that work in this unit.  They are so nice and calming.  I'd do plasma-exchange just to come visit them! (ok maybe I'd rather just bring in coffee...but that shows my appreciation).

Really the hardest thing about this whole story is that the plasma-exchange unit is in the hospital where I've spent the past two Junes in rehab.  I get sick to my stomach just thinking about it.  Granted, my weeks in rehab were very productive and I am entirely grateful for the experience and the hard work accomplished.  And yes, as I walked (WALKED) into the hospital I felt a sense of "hell yeah" as I realized how far I have come.

But what is truly terrible about MS is no matter how far you come, something else will happen.  Yes, I'm walking but I cant see.  Yes, I'm talking but I cant use my right arm.  It makes me want to cry because I just want a period of time where everything is just flat, normal.  

So I find myself with two options: sitting around waiting for MS to give me a break, or work like hell to live life fully, with MS in tow.  

I think I'm choosing the second one.

Love,

Ps: have you tried plasma-exchange?  Send me an email or leave a comment with your story!

 This wikipedia page does a great job at providing more information on the process and the  benefits: http://en.wikipedia.org/wiki/Plasmapheresis. 

If you have a difficult time with-standing steroids or have not been able to find any relief, I highly suggest asking your doctor about plasma-exchange. 

Oops

Oops. 

I guess it so happens I'm not so good at keeping new year's resolutions.

Aka The Sparkled Life blogging is making a 2014 comeback.

(ya baby!!)

Ive done much thinking about this decision.  I struggled to determine exactly what route I wanted to take as a blogger.

The most popular and "cutesie" blogs out there usually fall under three categories: 

DIY, wifey, motherhood (and usually a mix of all three).

Here's the issue...I'm actually pretty terrible at DIY, I'm not a wifey yet, and motherhood just isnt my thing at this time (besides you have to actually have a baby for that part...go figure).

So as I was comparing my past, current, and future blog life with those most popular and cute, I wasnt measuring up. 

That's when I realized that I wasnt suppose to be measuring up to those blogs.  I had a stance, a platform so different.  One that needs to be expressed, because unfortunately, there is little awareness about it. 

And that platform, ladies and gents, is my life with multiple sclerosis, aka The Sparkled Life. 

I may be horrible with a hot glue gun but I've gotten pretty damn good at living with ms.  And that's what I can share: my story, my secrets, my struggles.  

So here we are again...two years after I first started TSL I find myself logged back in and ready to share.  

Eek.  I'm even a little bit excited about it.  Who would've thought?  

Here we go, another chapter sparklers!

Love,

PS: check out @thesparkledlife on instagram to see what's been going on these past 120 days

 http://instagram.com/thesparkledlife

Sparkle On

Guest Blogger...Captain Team Sparkle...aka my Mom.  Love.

I've learned over the past few months that one of the hardest things about MS is its unpredictability.  Even when a MS sufferer is in remission they can have a good day followed by a day where they truly cannot get out of bed. (As one MS sufferer calls it, a pajama day! More about that later.) It is hard for people who aren't intimately involved with someone with MS to understand this. A person with MS can't plan vacations, dates, or appointments with any confidence that they will happen.  They don't know from day to day when a "pajama day" will happen.  

Unfortunately, friends and acquaintances don't always understand the unpredictability of MS and take offense when lunch dates are cancelled, phone calls aren't answered, emails aren't returned.  They feel inconvenienced when plans suddenly change.  What they don’t see is what the MS sufferer is experiencing which might include extreme fatigue, tremors, spasticity, dizziness, cognitive dysfunction, headaches, and a multitude of other symptoms.  They might be lying in bed with the curtains drawn, using all the energy they have just to get something to eat or go to the bathroom.   Talk about inconvenience!

Elizabeth recently had long time friends who wouldn’t talk to her for weeks because she had to cancel an appointment. The day that Elizabeth cancelled the appointment she spent the entire day in bed because of an excruciating headache.   It was not a good day.  In fact it was a very bad day.  Imagine the stress that Elizabeth had to deal with as she repeatedly apologized and was never really “forgiven”.

Imagine a world in which you worry about every birthday, anniversary, wedding, baptism, appointment, or vacation.  Will you be able to attend?  Will you have a relapse?  Will you simply have a “pajama day”?  And you have to worry about other people’s reactions.  How often has a MS sufferer heard, “But you were fine yesterday!”  Or, “How can you be too tired to meet with me?”

Why am I the guest writer today?  Because Elizabeth is having an extreme “pajama day”.  She was able to walk all the way down the aisle at her sister’s wedding.  She was able to give the Maid of Honor toast.  She was able to attend the day after “wedding brunch”.  She was able to go to a doctor’s appointment by herself.  She was able to go to Starbucks and address many MS Bike postcards.  And then it hit.  An extreme pajama day.  Actually, several extreme pajama days.  And we are praying that it isn’t weeks and months of pajama days.  But, once again, that is the trouble with MS: its unpredictability. 

BTW, why pajama day?  I don’t know where I first read it, but one MS sparkler posted that she does not call any day a bad day.  Every day is a gift and she will not label any of the days as a bad day.  And so she coined the term pajama day.  This leads to one more thing that I have learned about MS.  MS sparklers are truly inspirational and show the rest of us how to live. 

Sparkle on, Elizabeth.