My diagnosis and journey

I have deliberated quite a few times on whether to share my story mainly because it's been a hell of a journey.
It quite a difficult one to tell without it evoking emotions that i still try to suppress

My sister and my journey

It's hard not to tell my story without talking about my sister's one as our paths are entwined to some degree.

My sister and I were Irish twins born ten months apart, as I was born prematurely. For three months of the year, we were the same age and inadvertently twins. At the age of 19, we both left home to pursue our studies. She left to go up North to university to study I left to enter nursing school. It would be during her 2nd year that she would fall ill. It started with severe vomiting which was uncontrollable. This resulted in a hospital admission to our local hospital where staff would go on to tell her it was all in her head! Kmt!! After month she improved and seemed to be getting better from these mysterious symptoms and she returned back to resume her studies.

Eye pain as a symptom

Unfortunately, this was cut short when she started to complain of eye pain... well initially it wasn't pain but blurred vision and seeing things in black and white rather than color.

Needless to say by this time, we sought medical attention elsewhere and not at our local hospital. It was a large teaching hospital in Central London which would become our extended family. She would get better only to be plagued with another symptom. I remember her having a tracheostomy due to being unable to breathe thankfully this was later reversed when she got better.
It was hospital admission after hospital admission. This became the norm over the years. Eventually came the diagnosis of similar to MS. I remember this plastered all over her notes.

NMOSD diagnosis

There was no name for the condition back then, this changed to demyelination disorder then to devics syndrome to now NMO.
Repeated bouts of uti's would plague her. Each infection would trigger an attack or relapse that would eventually rob her of her sight and mobility. Treatment back then was very different from advanced treatment today.
Treatment would be antibiotics followed by steroids. They were not given together simultaneously like they are today. There was no plasmapheresis ( plasma exchanges) like today. Remember I'm talking about 1990/1991.
It wasn't all doom and gloom, we had good times as a family. She became a disability advocate and advisor until medical retirement. She was so knowledgeable, she was really good at her job.

The loss of my sister

Unfortunately, repeated uti's lead to bladder issues and sadly bladder cancer developed and robbed her of her life in 2019.
This was devastating to us all. My life changed in a flash and through all this, I worried more for our mom. When will we as a family catch a break?! We had already lost daddy in 2011 to the dreaded "C". Little did we know what was coming next. In August 2018, I kept feeling sick ... vomiting without cause. I was eventually admitted to the hospital. I had a colonoscopy, endoscopy, ct scan and MRI to be eventually told I had bowel adhesions. I had surgery to release the adhesions and thought nothing more of it. The explanation for the adhesions seemed plausible, as I was told this could havs been a complication from previous surgery for my hysterectomy. The surgery weny ahead and i recovered.

My symptoms

About a month later or so, I had about a 2 week episode of vertigo . This came out of nowhere. No visible ear infection was detected. As quickly as the vertigo had come, it Disappeared. I thought this was the end of any more ailments when a few weeks later around late November. I began to start experiencing itching. The itching was around my top of my legs and bottom.
I was convinced I had, had an allergic reaction to something and went as far to thinking it was the fabric detergent i was using for the laundry. I changed the detergent but it didn't help. I went to the Dr's and got some antihistamine cream, but nothing helped if anything it was getting worse. Much worse!.
I recall having a slight rash on my buttocks

The itching had now turned to intense burning and stinging. It was everywhere except my left arm chest and back was spared.
The stinging would reduce me to tears especially the stinging in the right arm. This would start from my elbow all the way down to the pinky finger. Just a small thing as putting a sheet or clothing brush my arm would trigger this electrifying response. The pain and stinging in my legs was crazy. I lay in bed terrified to move because of the pain.

This persisted and I knew this wasn't normal. I attended the local ER only to be told after waiting for hours, they were discharging me home . They would be doing a referral to the neuro team as they thought it MIGHT be neuro and to exclude this suspicion, the referral was made. Nothing for my pain or discomfort. No tests were performed!

At home, I struggled and now was completely struggling to get any sleep due to the pain.
I recall seeing flashing lights whenever I closed my eyes or recieved a bolt of electrifying pain.i felt like i was being electrocuted. I was suffering, my mother called to check on me and I updated her.
I told her things were getting worse.
She immediately said,.enough is enough and she's taking me to the hospital which had become my sister's second home.
I vividly remember literally wetting myself ( a episode of urinary incontinence this would happen again on 3 further occasions) as I was getting ready but i thought nothing off it and put the violent coughing as it the reason this happened.
Fast forward to arriving at the hospital.
We were greeted by the nurses who did their assessment and we waited for the doctor to come.
I recall the doctors face of bewilderment looking at me.
I was sent for an MRI scan immediately and told I wouldn't be going home.
I was seen by lots of medical doctors and eventually neurologists.
They initially thought that I had an infection caused by herpes simplex as I have had chicken pox at age 15. They were convinced that was it. Meanwhile my MRI results showed inflammation in my brain stem and spine.
I was started on iv antibiotics which did nothing! I was then subjected to a failed attempt of them wanting to perform a lumbar puncture, all whilst in excruciating pain by a medical doctor. Needless to say this was abandoned and later rescheduled under sedation as I couldn't curl up in a ball to have it done!
Meanwhile, the excruciating pain persisted. The doctors couldn't touch me as it would trigger electrifying pain. I was commenced on a small dose of morphine which did nothing !

I recall having a full on debate with a nurse as he refused to call the dr in the middle of the night. Remember I'm a nurse myself and i was disgusted by the nurses attitude. I was in agony and I felt so bad because my pain and discomfort was disturbing the other patients in my bay. They too were now beginning to challenge the nurse.
Eventually, a doctor was called and the morphine increased slightly, only to learn later I was getting 2.5- 5mg!!! What the hell, even my paediatric patients receive more than that! I was 76kg at the time. The maths wasn't adding!
Eventually gabapentin and steriods were commenced.
By the 5th day, i lost the use of my legs. I thought I'm imagining this. I recorded it on my phone to convince and tell myself this is really happening.
My right leg would buckle at the knee, Still determined to hold on to independence I would hop on my left leg to the toilet until I lost use of the left leg
The left foot would slip and glide across the floor when I attempted to stand whilst the right knee buckled. I was now reliant upon the wheelchair but thankfully still had strong upper body strength.
My body was now flooded with steriods but the pain was no better. My feet felt like I had severe frost bite!.
I also had involuntary movements where the foot would just roll, rotate like in a circular motion😳....( im so glad i recorded all these things)..my friend would call it my rogue foot. I also had an altered sensation. The nurses would put the pillow under my legs and feet but the pillows would feel hot like fire. I knew it wasn't hot even though what I was feeling was heat. Lidocaine patches were applied to my feet. Intense physio was to start but i was unable to stand, pain was crippling me. Was this going to be my new reality from the point on??

The neurologists came again and said they were going to do more tests. Electrodes over my head, arms. More MRI scans, more blood tests.
They were now convinced I had anti MOG particularly due to the pain i initially had involving my arms. The csf fluid from my lumbar puncture had all been clear and negative to any infection. I was transferred to the high dependency unit (HDU) to have plasma exchanges.Man!!!!!!... I don't know how I allowed them to put that neck line in without sedation! That was worst than child birth!

The 1st exchange was an experience, all I remember is talking to the nurse , her bringing me something to eat and drink..Next thing ..
Blank!....
I woke up surrounded by Dr's and nurse's around me with an ambi bag, i was terrified😳 apparently my magnesium levels and something else (can't remember what else now) were low and I was knocked out, sparko!
The doctors and nurse's were all reassuring me, that the incident wont happen again. I would recieve magnesium infusions as well.
I needed convincing as I required 4 more of these exchanges.

HDU become home for just over a week. I felt low, there were at least 2 deaths on the unit and it was xmas!

Eventually ,I was transferred back to the neuro ward where the physiotherapists would be become my best friends. I was determined to walk again.
It was extremely challenging, many times I felt low but couldn't afford to allow myself to wallow in self pity. I recall trying to stand for the first time, i kept falling back down. I got so angry with myself saying" this is stupid, why can't i stand" this should be something simple. It's amazing how we take walking, balance and standing for granted. These things done on auto pilot ..

Now, I had to think about balance , posture, positioning, steps.. the sequence and order of doing things , all whilst keeping yourself safe
My physios were amazing and often reminded me to be kind to myself and patient.
My physio often laughed at my somewhat obsession with my right leg, but became to understand my anxiety for its need to be strengthened so I could reach the goal to drive. I would say to her, the car is my legs. Legs, need to be able to drive!

My NMOSD diagnosis

My diagnosis came back..it was confirmed that I was aquaporin-4 antibody positive therefore have NMO exactly like my sister. My mom and siblings was besides themselves especially mommy.
I told her and the Dr's, it was just a diagnosis that wasn't going to define me and who I am.
I worried about how i was going to tell my children, not for me but for them. Their version and my siblings version of NMO was my sister, who was so debilitated from her NMO. Thats all they would relate to. I had to keep reinforcing that treatments are different now. I am not the diagnosis, I am me, who just needs to manage this condition.

I eventually went home after close to two months in hospital. I was discharged using 2 crutches. Physio continued and hydrotherapy became my life.
Endless hospital appts also became life with an altered diet as the high dose steriods have now given me insulin controlled diabetes.

My memories of coming home are bitter sweet, my sister now had her cancer diagnosis. She vehemently insisted that mom, me and our brother went out to dinner before her admission to have surgery. Little did i know that was to be our last family dinner outing together 💔

Today, I have mobility, left leg stronger with weak foot, right leg weaker but with stronger foot...( I can live with a strong driving foot 😉)

I was started on mycophenlate to help reduce the risk of a relapse. Unfortunately, I had to stop the mycophenlate, as the side effects were giving me hallucinations which was an awful experience.

Sadly the second amd third attack came in January 2021 where i suffered cord relapse. There was such a huge delay to treatment due to the awful pandemic. This resulted in a double admission and a total of 10 plasma exchanges ( May- August) I suffered spasms to my right leg that would happen randomly mid step whilst walking. Followed by unbearable burning up the left leg and under my coccyx ( has anyone else experienced this?🤔) i now have issues to my bowel which doesn't work properly.

Petrified that I would suffer further relapses, I have now been having iv rituximab infusions every 6 months. Thus far I am relapse free🙏
I am grateful to have found this community, it's wonderful to share experiences. I'm learning alot ❤️
Anybody on this journey, I strongly recommend you record a video diary, it really helps. Its a comforting way to reflect and realise how far you have come especially when you're feeling low or hopeless 🙏