Well…….This is Inconvenient

Marina J Sustayta

Diagnosis: AQP4-IgG seronegative NMOSD

(NMOSD with no antibodies)

So here’s my story…..

Buckle up!

First, some background; I’m a Hispanic female, current age: 38.5. I’ve been an athlete since birth, parents made sure we ate fresh healthy foods. Always water or fresh juice and milk.. Never really had junk etc, until my step mum came into the picture, haha. So, overall always been healthy and active. No drugs, or smoking ever. Had my share of alcoholic beverages in my early 20s. Hardly ever have any alcohol nowadays, only on occasion for special events. Still maintain a healthy lifestyle with food and exercise in conjunction with wholefood supplements.

Fast forward….

I was diagnosed with what they thought at the time was MS with abnormalities in 2010, just shy of 2 yrs after having my first progeny. My Chiropractor/current employer(I’m a physio-massage therapist)/my beloved friend is the one whom first noticed the neuro connection.  Started out with weakess in my right leg, which wasn’t uncommon, I have back issues. About a week later started losing feeling and as the days progressed I was dragging my leg around.

Went into emergency, turned me away, because apparently they thought I was looking for drugs (I definitely did not look like I was on any type of drug, I don’t even take Tylenol!). I mentioned that I was not in any pain, quite the opposite! I couldn’t really feel my leg. Sent me home said to see my Dr. It took a few days to get into see my practioner. I got progressively worse during the wait, I couldn’t feel much of my legs or torso but was able to manage to walk whilst dragging that leg. My Dr took one look at me called the hospital and asked which Dr saw me, ripped him a new one and secured a bed for me. I continued to lose feeling and eventually went paralyzed. Forehead to toes. 

It was interesting; I could move my upper body, but could not feel it. I couldn’t move my lower body, but can feel. Talk about bizzaro! Eventually after all the tests, I was diagnosed with MS with “abnormalities”. Ooook? Was on intravenous Salu-Medrol for about a week. Physical therapy, was on an injection for about 6mo -but really wasn’t doing anything (the Copaxone). From then it was exercise, clean eating, supplementation and my chiropractor. I fully recovered in about 6mo, with just some residual numbness. My legs do get tingly if I go on long walks or runs specifically, it’s more irritating than anything, not debilitating.

Fast forward 7 yrs.

Relapse.

It was a doosy.

Again, almost 2 years after giving birth.

Started noticing visual issues. Also during this time I thought I had the flu because I had persistent vomiting, which I later found out was a symptom. Crazy, right? Vision progressively got worse to eventually losing it all with the exception of a spec of light. This time, I was turned away by my hospital. Went to another nearby was about to get turned away (I know right!?) This is a whole other story for a different day. They were about to turn me away but eventually took me. Mind you, I’m telling them I can’t see. Not one Dr looked at my eyes until I was admitted! Put on the steroids for about 3 days, sent me home. 

It did improve my eyesight to about 25%. About a week after, I started losing my memory. It started out with just little things, but then it got worse. I couldn’t recognize my environment but I knew where I was. I couldn’t remember my kids names but I knew they were mine. I couldn’t keep a conversation because 2 minutes in I couldnt remember and according to my brother, I would repeat my self as if I was on a reset. I would vacuum, constantly, because I couldn’t recall that I already did that section. 

Started losing feeling on my right side with weakness. This time we made the 3 hour ride to Stanford Medical. Lucky that it’s not far. Did every test, scan, lumbar, you name it. After they were for sure, put me on IV steroids for about 11 days. Re-diagnosed with NMOSD. 

I am almost 4 years in recovery. I have 70 – 75% sight. The 25-30% visual deficit is not black, just extremely blurry. I can see movement and light, more like Magoo vision, lol. Also, it’s my right visual cortex on both eyes. Not my right eye specifically. Stress tends to have a factor on that %. Higher stress tends to effect my vision.

My right-side is partially paralyzed, what I mean by this is; I have strength and movement, ust fatigues faster and can’t quite feel superficially(skin) it feels a little asleep is the best way I can describe it. I can feel deeper pain just fine; muscle aches and pains, stubs, cramps, cuts.

My cognition can still be an issue, definitely not as extensive as when it became deficit. I really have to focus, more like that dog on “UP”. It has helped me to stay more astute and vigilant because I need to be.

There is a shadow over my sight, as if I’m perpetually wearing shades. I do protect my eyes with rose colored lenses. This allows me protection, without accentuating the shadow. It brightens my vision. My eyes and optic nerve have always been healthy themselves. No damage to the eye or optic nerve. The problem is the visual cortex in my brain.

All in all I lead a pretty normal life. I get infusions every 6mo. Lead a healthy lifestyle in conjunction with my chiropractor and nutrition. My Neurologist calls me a “Wonder Woman” because even after 4 yrs since I relapsed, I continue to improve. Keep hope alive, it’s possible!

My go to’s:

-Exercise

-Clean(ish) eating

-Chiropractic care

-Clean living

-Supplementation 

-Trying not to sweat the small stuff

-Taking it one day at a time

*Marina

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