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Julia Will Be Fine

~ An unexpected MS Journey

Julia Will Be Fine

Monthly Archives: January 2014

Starting Rituxan

22 Wednesday Jan 2014

Posted by juliawillbefine in Treatment

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ms, multiple sclerosis, rituxan, rituximab

The decision to start Rituxan was fraught with worry.  I know it was recommended by the MS Specialist and she had both MS and NMO patients on it that were doing well.  She even offered us several stories of folks who were more mobile post Rituxan then before.  On top of that, she took the time to explain the mechanism in a way that I would understand.  All the same, I was concerned.

For those who are not familiar, Rituxan (Rituximab) is not FDA approved for MS (and likely will not be).  It is a monoclonal antibody that destroys B cells, a very specific cell that is a part of the immune system.  Although used for certain cancer treatments, it isn’t a standard chemotherapy agent and is used to treat several auto-immune disorders including Rheumatoid Arthritis. Progressive Multifocal Leukoencephalopathy is still a risk (and a frightening one) but those who are familiar with MS medications know that risk exists with other MS meds and the risk with Rituxan is much lower. 

My dad, who is a family doc, my mom, my husband and I all attended the appointment to discuss the medication choice.  We all left with a positive feeling, but I received a call later that evening from my father saying that he didn’t want to influence my decision, but thought it would be good to research the medication choice a bit more.  As it turns out, he had pulled it up on Epocrates and read all the warnings – enough to scare anyone.  Thankfully as a doc, he has access to other physicians and was able to speak to someone who administers the medication routinely in their office.  He was assured based on their conversation that they rarely saw the complications that were of concern – those were mostly seen with folks on other chemotherapy medications.  So, we made the decision to proceed.

Within two weeks of my discussion with the MS specialist about the medication, my husband and I found ourselves on the way to the infusion center for my first Rituxan infusion.  In spite of all the discussion, I was immensely nervous and my blood pressure was very high.

I went back initially without my husband so they could get me set up.  I got comfy in a chair, they wrapped my arm in a heated blanket (to help start an IV) and talked to me a bit about what was going to happen.  Vitals were taken, an IV started, and then my hubby was ushered in to sit with me.

They started by giving me Tylenol to take, then started infusing a steroid.  Once that was done, they gave me Benedryl IV.  I am incredibly sensitive to Benedryl and had to fight hard to stay awake, but at least I was more calm.  The nurses started Rituxan at a very low infusion rate and slowly increase it in stages, taking vitals at set intervals, and checking up on me frequently.  I dozed in and out for a while and then noticed – right around 150 – that my scalp was slightly itchy.  Then my ear started to itch, and then the right side of my face.  I asked Wayne to get a nurse and they came over and stopped the infusion.  At this point I was feeling hot and flushed.  We waited a few minutes to see if it would calm on it’s own, but the decision was made to give me more Benedryl and another steroid infusion.  We waited 30 minutes for the flushed and itchy feeling to subside, then restarted the infusion again at the lower level.  An infusion that should have taken 6 hours or so kept us (and the poor staff!) there for a total of 10 hours.  We were literally the last people in the building.  🙂

I was a bit nervous about the 2nd infusion based on the first experience, but the nursing staff explained to me that I likely experienced mild cytokine release syndrome and it is fairly common.  It meant the medication was doing its job and it likely would not happen again.  Sure enough, the 2nd infusion was much easier.  My mom was with me this time to keep me company and we were in and out in 6 hours with no need for additional mid infusion meds (just the typical pre-treatment Tylenol, Benedryl, and steroid).

After both infusions I was told that I could return to normal duties, but that didn’t happen for me.  In both cases it took me two full days post infusion of sleep to feel like a normal person again.  My body just felt worn out.  After those two days, my energy level started to return and was better than before the infusion.

The good news came a few weeks later when I received my lab results and my CD20 counts were zero! The tentative plan is to re-treat again in six months to keep those levels at zero.

Managing the Symptoms

20 Monday Jan 2014

Posted by juliawillbefine in Daily Life

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medication, ms, multiple sclerosis, symptoms

After all the doctors visits, MRIs, and lab tests, I was still left reeling a bit.  Instead of receiving a final diagnosis, I received a “it is most likely MS” diagnosis.  Again, difficult for someone who appreciates order and planning.  For my personal sanity, I approach everything as if I have MS as (again) this is the most likely scenario.

One thing they don’t tell you up front about high dose steroids?  They are really rough on the stomach and can make you a bit emotionally unstable.  I was a bit unstable from everything that was going on to begin with, so this became pretty extreme.  I began taking two omeprazole (prilosec) daily to settle my stomach (I had a previous prescription due to heartburn) and it would help my stomach some.

In the midst of all this running back and forth, the IV steroids had returned most of the feeling in my left leg and my balance, but a burning pain remained that seemed to get worse in the evenings and at night.  I remember the first day it happened and how confused I was.  I left work and went to my parent’s house and took off my sock & shoe.  I kept feeling my foot and was confused that it felt cold to the touch, but the inside was on fire.  My dad, a doctor, explained that it was likely neuropathy and that I would need medication to control it.  I called the on call doc and got my first gabapentin prescription.

On top of the burning, I was waking up most nights in horrific pain as the calf muscles on the left side would seize without warning. It would take an hour of so for the pain to reduce and my heart to stop pounding enough to go back to sleep.  Not the most restful situation.  Enter baclofen.

At some point in the course of lab draws it was brought to my attention that my vitamin D level was very low (18.5 at first check), so I was put on vitamin D supplements.

So, I went from a relatively healthy 33 year old to a somewhat unstable 33 year old MS patient in 6 short weeks.  I was previously taking one pill a day and am now up to 7 or 8 depending on my symptoms.  Life has definitely changed.

Seeing Specialists Galore

18 Saturday Jan 2014

Posted by juliawillbefine in The Beginning

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diagnosis, mri, mri results, ms, multiple sclerosis

Off I went armed with this question of my diagnosis to Rheumatology, Infectious Disease, and back to Ophthalmology again.  I started a USB flash drive of all my medical records organized by type and date as well as a book of medications, health history, and symptoms with dates.  Basically, I learned to become a better historian and rather than trust each doctor to have the records they needed, I would bring printed copies of anything that I thought would be relevant to them.

Infectious disease ordered more labs and after several visits basically told me that he could not point to a virus or infection to explain my symptoms.

Rheumatology said they didn’t believe I had a current Rheumatological condition, but that I should monitor a few things including the potential for developing future ulcers on my finger tips and that I should return if any new or unexplained symptoms arise.

Opthamology told me to continue the meds for my eyes and that they wanted to monitor me for vision loss every six months or so.  The meds were working in that I wasn’t experiencing vision issues, but when he looked into my eyes, he was seeing no improvement.

With all this knowledge, I returned to the MS Specialist with, well, nothing.  Apparently it was the information she needed, and on Nov 4th she spent an extended amount of time with me, my husband, and my parents to go over my MRI scans individually and to discuss what she believed was going on.  My NMO (aka Devic’s) test came back negative, but we had been cautioned in advance that it was possible to have a negative result and to still have NMO.

The short version is this: I most likely have MS; however, she cannot completely rule out NMO.  Based on this new and scary information, it was recommended that I consider treatment with Rituxan (Rituxamab) as it is a medication that should adequately address both situations.

Questioning the Diagnosis

14 Tuesday Jan 2014

Posted by juliawillbefine in The Beginning

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diagnosis, mri, mri results, ms, multiple sclerosis

As a reference point, we are still in October here.  It amazes me still to think back to everything that happened in such a small amount of time.

In late October I visited with the MS Specialist for the first time.  The visit was long.  The nurses did a series of tests before the Neurologist came in and we talked for an extended period of time about my history before she did an exam herself.

I went into this visit with expectations.  I was sure she would confirm the MS diagnosis and help me choose the appropriate medication so that I could return to “normal” life again.  Instead, I was told that I may have MS or I may have Neuromyelitis Optica (NMO aka Devic’s disease).  Remember the 6.8cm lesion?  Well, it seems that MS lesions average around 1.2 cm in length.

How is this decision made?  We needed to start ruling things out and get more blood tests.  I was sent off to Infectious Disease to address the positive Lyme result found several weeks earlier, to Rheumatology since I also had a positive ANA, and back to Ophthalmology to address the ongoing concerns with my eyes.  I left with the working diagnosis of Transverse Myelitis.

Although I liked the doctor very much and trusted her right from the first visit, I left in a bit of a stupor.  I remember that we had stopped in Whole Foods on the way home to pick up groceries and I had to leave the store at one point because I was having a panic attack.  In such a short time, I went from no diagnosis to several diagnoses and now we may be modifying what my brain was trying to accept.

For a girl who loves nothing more than planning and control of situations, this was a total nightmare.  I felt like someone was taking my life and tossing it up in the air to see how things landed.  There was nothing there for me to hold onto.

The Original Diagnosis

12 Sunday Jan 2014

Posted by juliawillbefine in The Beginning

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diagnosis, mri, mri results, ms, multiple sclerosis

So, here I am returning to the Neurology office with no clue what to expect.  I tried to assume away all the strange things happening to my body and it just wasn’t working.  I assumed they were in my head.  Maybe I was making them up and none of this was really happening to me?  I had been to doctors in past telling them that I just “didn’t feel right” or that I had pain in my hip, but they were never able to find anything wrong with me, so I almost expected nothing to come of this either.

The Neurologist visited with me a bit and then decided to stick a sharp object against my leg.  I could feel nothing.  Literally.  His comment was that my symptoms were highly suggestive of MS and that I need yet another MRI – thoracic & lumbar this time.  {For those not keeping count, this is the third MRI, fourth and fifth study}.

Off I went again.  Did I mention that I am highly claustrophobic?  No?  Well, you can imagine that each of these studies caused a significant amount of trepidation.  The 2nd study took a while to get scheduled my I did it under anesthesia.  I was worried enough about this one that I didn’t want to wait and was put on the schedule as soon as the hospital could work me in.

I had the MRI on 10/15.  I work in a doctor’s office so I am often able to receive results early on & this case was no different.  This one was clear – “findings most indicative of multiple sclerosis with an enhancing active demyelinating plaque.”  I immediately started to cry.  On one hand, I felt relief – someone finally knew what was wrong with me!  On the other hand, extreme panic.  I had no understanding of the details of the MRI report except that I was pretty sure there was an error in transcription.  It said I had a 6.8cm section “consistent with demyelinating plaque.”  That seemed way too long and I assumed cm should have been mm.

I received the call from the Neurologist’s office on 10/16 that I did in fact have MS and that I would need a round of 5 days of IV steroids.  I expected the call based on what I had read, so it came as no surprise.  I had already put a call into the MS Specialist’s office and requested to be put on a cancellation list for an appointment.  I started my steroids and hoped I was able to get an appointment in 2013.

Of course, nothing is simple with me.  I have temperamental veins.  After having two separate nurses look at my arms, the infusion center requested that I have a PICC line in order to receive my steroids, so I spent a day at the hospital waiting to be worked in for a PICC line, having it put in (it took two tries) and then returning to the infusion center for the main event – the steroid treatment.  Once the PICC line was in, treatment was easy.

While receiving my infusion, I received a call from the MS Specialists’ office that they had a cancellation on Monday.  I was incredibly excited that everything seemed to be happening so quickly and I was going to get the appointment that I assumed I would wait 3+ months for was just a few days away.

And the Saga Continues…

10 Friday Jan 2014

Posted by juliawillbefine in The Beginning

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diagnosis, mri, mri results, ms, multiple sclerosis

…Flash forward a few weeks.

{Background: I work full time, but my husband and I also own a small bath and body company.  He is home and makes product while I help with the financials, customer relations, IT, etc in the evenings and on weekends.  Periodically I will go to retail shows and sell product or attend shows with him. }

This particular weekend in early October we had two shows back to back.  Saturday we were scheduled in Alexandria, VA and on Sunday in Chapel Hill, NC.  It is a ton of driving and work with little sleep in between.  All the same, we were looking forward to it as we always enjoy when we get to attend together.  The weekend was unusually hot and as the day wore on, I started having trouble sitting outside.  I felt so overly tired that I could have fallen asleep on the pavement if it wasn’t so hot.  I kept getting up and walking to a coffee shop that had air conditioning to cool off.  My legs were weirdly heavy and it took this immense amount of effort to do anything so much so that several times I almost started to cry.  I made it through the day, but felt weak and awful afterward.  I told my husband how bad I felt and spent most of Sunday hiding in various shops/restaurants instead of helping him at the booth.  I assumed the new medication was making me a bit more sensitive to the heat and/or sun and it was just taking a toll on me.

I felt much better after returning home, but had horrible hip pain on the left side that was making it hard to sleep.  I assumed the pain came from being in the business van for too many hours in a short time frame.  To my surprise, I woke up the next morning with absolutely no feeling in my left leg.  The whole leg and foot was gone.  I got up and realized that I was having a little bit of trouble functioning.  Simple tasks like stepping out of the shower or going up stairs were much harder to do as I couldn’t seem to figure out where my leg was unless i was staring at it.  I started noticing my balance was off as well.

Over the next day I got a bit scared as the numbness started to creep higher and I began having difficulty urinating.  I visited my PCP and called the Neurologist.  I adamantly told the Neurologists’ office that I needed to reduce the dose of the new meds because it was causing me so much trouble.  They told me to continue the medication, but to come in for an appointment.

Where to Start?

08 Wednesday Jan 2014

Posted by juliawillbefine in The Beginning

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beginning, diagnosis, ms, multiple sclerosis

My name is Julia and I have Multiple Sclerosis….I think.  We’re pretty sure anyway.  This will make more sense after a bit of reading.

I struggled a bit with where to start with this blog, but decided the beginning was as good as any place.  Everyone’s MS story is slightly different….this is mine.

My journey started in late summer of 2013.  I was experiencing periodic loss of vision in my right eye.  This had happened before and I had seen several folks to address it, but I was told initially that it may be migraines and was later told that I had papilledema (optic disc swelling) in both eyes and that it appeared to be normal for me although not normal in the general population.  So, when this started repeating in late August of 2013, I didn’t panic.  I did get a bit nervous when it was happening more and more frequently during the day and becoming distracting, so I returned to the ophthalmologist.

After discussing what I was experiencing and looking in my eyes, I was told that some testing needed to be completed as soon as possible to rule out a few conditions.  Off I went for my first brain MRI and a large amount of lab work.

After this first round, I was sent off to a local Neurologist.  Several of my lab results had come back positive including my Lyme disease titer.  It was decided that I needed another brain MRI, a cervical spine MRI, and a lumbar puncture.

Off I went again for more testing.  The lumbar puncture was completed first – within just a few days of my visit with Neurology.  The procedure itself was way less exciting then I expected although I did end up with a spinal headache and had to get a blood patch.  I received a call from the Neurologist that I had a high opening pressure leading to a diagnosis of Idiopathic Intracranial Hypertention.  I was started on medicine to reduce the spinal fluid pressure and it was expected that my vision would improve.  I thought we were fairly settled at this point.  I had a diagnosis that explained my loss of vision and the medication was going to correct the issue.  I was asked to return to the Neurologist in a month for follow-up.

Out of the blue (for me at least), I received a call from the same Neurology office telling me that the remainder of my lumbar puncture results came back and that my MS panel was positive.  I remember being very confused on the phone.  I just couldn’t understand what they were telling me.  I was told that they were unsure of the significance of the results, but wanted to send me along to an MS specialist just in case.  

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