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Phil’s NMO Story – A Journey to a Diagnosis

Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO

Here is my story of how I was diagnosed with Neuromyelitis Optica and just how scary it can be knowing that something is wrong but not being able to find out what that something is.  I am not one to share my emotions.  The last 15 months have harbored some of the scariest times of my life.  Were it not for my wife, family, closest friends, and my work, I never would have made it this far.  I have tried my best just to stick to the facts of what has transpired over the last year in hopes that others who might see this and not know what is wrong can find a direction.

On June 2, 2017, I went out with some friends to a local brewery and tried some of their brews.  We got home around 8 and after talking for a while, we went to bed.  The next morning, I woke up and things seemed to look a little blurry, but I felt fine otherwise.  I assumed it had something to do with going out and maybe not getting as much rest as I needed.  I didn’t think too much of it at the time and I went to Crossfit to practice with my team as we had a big competition coming up.  Practice seemed to be fine, except for the part where I was lying on the ground asking myself why I do this, and I went about the rest of my day like I normally would.  Sunday was uneventful, and everything seemed to be fine; I didn’t even notice that anything was wrong with my vision.

Monday morning, I noticed I had some white spots in my vision but again, didn’t think too much of it.  I went to work and by that afternoon, decided that maybe I should go see an eye doctor.  I got hold of a local Optometrist and got in to see him on Tuesday.  Well, he just told me I needed glasses.  At this point in time, I had lost most of my field of vision in both eyes, so I knew it wasn’t just that.  I was really starting to get scared but put on a face for everyone that nothing was wrong.

The next day, I was at work and I can remember standing in the office and not even being able to clearly see who it was I was talking to.

I called my chiropractor thinking maybe something was just out of alignment and I had pinched a nerve somewhere.  I had no idea what was going on. This was scary as hell.  I didn’t even know who to turn to as I had never heard of or experienced anything like this before.  She got me in that day and made some adjustments and sent me on my way.  Thursday, things continued to get worse, so I called my PCP and got in to see him Friday morning. I remember trying to explain to him what was happening, and he handed me a blank piece of paper and a pen.  He asked me to outline the white or blind spots that I was seeing.  I said, “I can’t – the spots are constantly moving, and I can’t discern a pattern”.  He said to me if you have blind spots you should be able to outline them.  Essentially, he called me a liar.  I’m not a violent person but it took everything I had not to lash out at him.  He is obviously in the wrong business as caring for people does not seem to be his primary concern.  Needless to say, he is no longer my PCP. Even the eye doctor called me a week or so later to apologize for not knowing what was going on, but he couldn’t have known.

Things continued to decline and Sunday morning, I woke my wife up early and said we need to get to the emergency room NOW.  I wasn’t there very long before they admitted me.  I had some MRIs of my head and spine done and was immediately started on high dose steroids for 3 days.  They had found a lesion in the optic tract just behind the optic chiasm.  I spent a few days in the hospital and was eventually discharged with a diagnosis of optic neuritis.

I followed up with the local neurologist whom I had seen in the hospital and informed him my symptoms were not improving.  He performed a lumbar puncture and set me up with another round of high dose steroids.  Again, these had no noticeable effect.  A couple of weeks later, I had a follow up appointment at which time the PA informed me that I had Multiple Sclerosis and that I would have to take medicine for the rest of my life. Well, having an Aunt who died of MS at a very young age and remembering what she went through, my head began to spin with the implications of what I had just been told.  He left so my wife and I could talk.  Somehow, I managed to keep it together and a few minutes later he came back in with the neurologist who informed me that I did not actually have MS.  He then went on to explain that for a diagnosis of MS, there needs to be 2 separate occurrences separated by time.  He said to me, and I quote, “We are just going to have to wait for the other shoe to drop”.  Well what the hell does that mean?  I left there reeling from everything that had just transpired and after gathering my wits; I decided I wanted a second opinion.

I met with a fair amount of resistance but eventually I did get referred to an MS specialist.  In the interim, I underwent yet a third round of high dose steroids which once again had no noticeable effect.  I finally got down to see the MS specialist and she was very nice, seemed very knowledgeable, and took the time to listen to everything I had to say.  She told me that I did not meet the criteria for MS but that she would like to run some more scans.  I agreed and we set it up. I had the scans and followed up with her.  She said that the lesion on my optic tract appeared to actually be smaller than it was previously and that my spine showed a couple of artifacts but nothing remarkable.  I left there feeling a little bit more assured that everything was going to be okay and that maybe my vision would even recover.  That however, did not last long.

She sent me to an ophthalmologist who checked me all over and found some problems with my optic nerve but overall that my field of vision was improving.  I am now 5 months removed from the onset, have had multiple MRIs and have seen more doctors than I can remember and am still no closer to an answer than I was the day it happened.  I can remember getting home that night and sitting at the island talking with my wife who was making dinner.  It was at this point that I finally broke down and let all the emotion come pouring out.  Well this doctor had a colleague that he wanted me to see who worked at Brigham and Women’s Hospital in Boston, MA.  I finally got in to see him in November and he listened to everything I had to say. He did a thorough examination and told me that as it stands right now, he can only tell me I have a lesion on my optic tract and no other symptoms to support anything more.  He scheduled me to come back in 6 months.  I again felt better but that feeling fades relatively fast and I’m still left knowing that something is wrong.

So, a couple of months go by and my eyes heal some and then I have flu-like symptoms and my eyes go right back to where they were when this all started and I am back in to get a 4th round of high dose steroids.  I don’t know if they worked or not.  I had an appointment in January to see my local neurologist and explained to him everything that had transpired and he suggested Acthar.  Acthar is a very expensive injection that you have to give yourself.  The only thing that this accomplished was making me feel like crap for about 3 weeks.

On February 2, 2018, I was at an annual conference in Bangor, ME when my legs started to feel like they were falling asleep.  I lost all sense of touch on the backs of both legs from my waist to my feet.  I was starting to get very scared but at the same time trying not to let anyone know what was going on.  I called the MS specialist and she wanted to see me but I had ridden with my boss and didn’t want to make a big deal of things, so I stuck it out for that day and went to the ER when I got home.  They did a couple of MRIs and found there to be nothing remarkable on the MRI.  At this point, I just gave up and decided that I would just live with whatever was happening to me because I couldn’t seem to get any answers.

On May 18th I had another appointment with the doctor at Brigham and Women’s Hospital and when I told him my story, he was more than a little aggravated and said that they should have diagnosed me with MS at that point because that was the 2nd occurrence that was talked about when this all began.  This doctor however, being very thorough, referred me to another doctor. In the meantime, he ordered another set of brain and spine scans to check for any lesions.  As it turns out, I have a lesion extending from C3 all the way to T1.  It was now clear that something was definitely wrong and from my point of view it all pointed to MS.  Little did I know there are other autoimmune diseases out there that will also attack myelin.

On June 28th I met with another incredible doctor at Brigham and Women’s Hospital.  We talked for quite a long time and she did a very thorough examination and concluded that I had NMOSD.  I honestly had no idea what she was talking about but at least I finally had a name to put to this disease that was attacking my body.  Then I made the mistake of visiting websites and reading about relapses and how this disease is cumulative and degenerating over time.  I started feeling nauseous and dizzy and then one day at work I started to notice my legs going numb again and my vision getting worse.  I used the patient gateway to send my doctor a message and she called me as soon as she got it and admitted me to the hospital that day.  After another set of MRIs and a whole lot of blood being drawn it was determined that I had a pseudo exacerbation.  What that means is just an intensifying of current symptoms and no new lesions being formed.  I was a little embarrassed but in hindsight was probably the best thing I could have done because of the amount of knowledge I gained from all of the doctors attending to me.

I just had my most recent appointment with her on August 3rd and everything went well, and she informed me that I’m doing very well.  We have decided to move forward with the Rituximab infusion and are very hopeful that this will halt the progression of this disease.

I can’t stress enough how important it is to advocate for yourself when you know something is wrong and you can’t get people to listen.

I’m not a tough guy by any means.  I am, however, a private person and I don’t wear my emotions on my sleeve.  I keep most things inside and this was by far the scariest thing I’ve ever been through.  My wife, my friends, and my work are what got me through this.  I started this job 3 weeks before onset and they have stuck with me the entire time. Even with everything that has happened, I’ve only missed 8 days of work. I also can’t begin to put into words how incredible the doctors have been at Brigham and Women’s Hospital.  They are without a doubt second to none in my book.

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