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.

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.

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.

…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.