Neuromyelitis Optica (NMO) – My Story

Most of you will never have heard of Neuromyelitis Optica (NMO)… I certainly hadn’t before January 2018, when I was diagnosed with this extremely rare condition.  Each person diagnosed with this condition has differing symptoms, different severity, different amount of recovery, differing recovery rate.  Because of the rarity of Neuromyelitis Optica, there isn’t much to find on the internet in information on the subject.  It appears I am just one of around 700 people in the UK who are affected by this disease.

That is why I am going to tell my story of how Neuromyelitis Optica has affected me, as it may help others who are eager to find anything on the subject.

Neuromyelitis Optica – Early Signs

My name is Graham Wood (aka Joe Blow, sim racer).  Towards the end of November 2017, I started experiencing lower back pain.  I didn’t think much of it, as I’ve had back pain come and go over the years.  I was running my own business (Graywood Support Services), supporting adults with Autism, also acting manager for Rainbow Autism, travelling around 2500 miles a month.  At 56 years old, I considered myself physically “fit as a fiddle” as they say, doing the Malvern Hills summit twice a week, swimming once a week, 4 mile walks 3 times a week.  But this lower back pain was getting worse, eventually causing sleepless nights.

I’ve never been one for taking pills or medicine… I’ve always believed in letting my body fight things naturally.  But towards the end of December 2017, I started taking paracetamol, along with ibuprofen.  The pain was worsening still, so I went to A & E to seek stronger painkillers… this was now the 1st week in January 2018.  The doctor prescribed some strong painkillers, then also asked me for a urine sample.  I took the little sample bottle into the gents toilet, to get the urine sample.  But try as I might, I couldn’t pee.  I told the doctor I would take the bottle home with me, then send the sample in the next day.

Two days later, I still couldn’t pee, so I googled “urine retention”.  On what I read, I could see I needed medical help, so I went back to A & E to get help.  I was immediately admitted to hospital with acute urine retention.  A nurse did a bladder scan which was off the scale.  The equipment shows up to a maximum of 1000 ml, so I was retaining more than that! Usually, retaining urine more than 600 ml, a person is in severe discomfort, yet I had no discomfort, no pain at all.  The nurse then fitted me with a catheter, which drained off 1500 ml of urine!  I was later that day transferred to another hospital where they specialised in urology.

During my 3 day stay at the hospital, I had severe bouts of hiccups, lasting 24 hours or more.  I was examined by a urologist who decided to treat me for prostatitis.  I was given a 28 day supply of antibiotics, then sent home, with my catheter bag.

The following 2 weeks were terrible… I was not eating, vomiting, having hallucinations, mood swings.  My legs were getting weaker.  I stopped going to the toilet for bowel movements, but at the time I thought it was because I was not eating.  My wife tried her best to get me to eat, just a little, of anything.  Eventually, in the middle of the night, I got out of bed and dragged myself to the toilet to empty my catheter bag.  My balance was all over the place, it felt like everything was sloped towards the staircase.  On the way back to bed, I remember thinking “just 2 more steps”… the next thing I knew I was collapsed on my back on the floor.

The next day, my sister came over and wheeled me to the doctors in a wheelchair.  An assistant tried to weigh me, but I could hardly stand.  My sister and the assistant somehow got me onto the scales, where it was recorded I was just 62 kg (9 stones 7 pounds).  I’m 6 feet tall and normally 11 stones 7 pounds.  The doctor referred me immediately to hospital.

Sandwell Hospital – Tests

So, I find myself back in the same hospital where I was 3 weeks before.  But this time, the doctors and consultants had more to go on, as I had more symptoms now.  They took blood for testing, sent me for an MRI scan, also gave me medication to stop me vomiting.   I now started to get double vision, which was very confusing for me.  After a few days, a bed became available on the neurology ward, so I was transferred there.  I discovered if I covered up one of my eyes, the double vision was not there, so one of the nurses made a temporary eye patch for me.  The consultant put me on bed rest while they tried to figure out what was wrong with me.

I remember at this time a lower limb examination was carried out on me.  This test consisted of testing for tone, power, reflexes, function and sensation.  My leg muscles had wasted, there was reduced power, my reflexes were gone completely, along with virtually no sensations in my legs and feet.

The next 2 weeks consisted of more bed rest, another MRI scan, 2 CT scans and a large volume lumbar puncture.

Diagnosis and Treatment

Eventually when the results of all the tests were back, after discussions of consultants with doctors and other consultants, a team of neurologists surrounded my bedside and relayed to me their diagnosis.  They had discovered legions on my lower spine, also on my brain stem and optic nerve.  These legions had become inflamed, triggering a response from my auto-immune system.  My auto-immune system mistakenly attacked my nerves around the inflamed areas, causing all of my symptoms.  This condition is Neuromyelitis Optica. I was immediately hooked up to an intravenous drip of high dose steroids.  This would hopefully eradicate the inflammation. I stayed on this intravenous drip for 5 days.  After the 5 days, I then started on a 60mg dose daily of prednisolone, a high dose aggressive steroid, designed to suppress my auto-immune system.

Unfortunately, there are side-effects when using prednisolone, especially in such a high dose.  These side-effects can be:

• Increased appetite, weight gain, and nausea.
• Increased risk of infection.
• Dermatological effects including reddening of face.
• Fluid build up.
• Swelling of stomach lining, reversible increase in liver enzymes.
• Muscle weakness and muscle loss.
• Osteoporosis
• Neurological effects, including involuntary movements, headaches and vertigo.

So, because of these potential side-effects, I was prescribed a list of drugs to take to counter these adverse effects:

• Alendronic Acid
• Azathioprine
• Adcal D3
• Lansoprazole
• Tamsulosin

I started to experience severe pain in my legs.  The pain increased and eventually was stopping me from sleeping.  As I still had no feeling or sensation below my waist, it was explained to me that what I was experiencing was neurological pain.  I was prescribed 2 drugs to treat the pain, Amitriptyline and Gabapentin.

The predisolone really kicked off my appetite, I was hungry all the time and eating everything in sight!  Initially, this was a good thing, as I had lost 2 stones before I was admitted to hospital.

The amitriptyline helped with the pain in my legs, changing the sensation of the pain from the feeling of being shot in the knee caps, to a deep frozen feeling, and sometimes an extremely hot feeling.  Although this was still very painful, I managed to sleep… at last.  But there is a down-side to amitriptyline… side effects.  I found that taking amitriptyline too early, like 6.00pm, would make me drowsy by 9.00pm, I would sleep, but wake up at around 4.00am.  If I took it too late, like 11.00pm, I would be spaced out until mid-afternoon the next day.  So I take it between 8.00 – 9.00pm, but I’m still spaced out until 11.00-12.00 the next morning.  But I can cope with that.  The other side effect of amitriptyline is a very dry mouth, which I experience about 1 hour after taking it and it lasts all night.

Although I had no sensations in my bowel and bladder, I used to call a nurse to wheel me to the bathroom each morning in a wheelchair.  Once in the privacy of the bathroom, I found I could transfer myself onto the toilet.  Amazingly, I had bowel movement… as if my body could do this automatically without any conscious muscle control, as long as I put myself in the right environment, ie the privacy of the bathroom with the door locked, and sat on the toilet.  I could then empty my catheter bag.  I would then transfer myself onto the shower chair and take my shower.  After a few days, I asked if I could keep the wheelchair by my bedside, which they allowed.  My upper body strength was returning, although only about 75% of what it was.  I found I could take myself to the bathroom unaided, by transferring myself onto the wheelchair, then propelling myself to the bathroom.  This was great, as I didn’t have to ask anyone for help, I could just go whenever I wanted… independance!

I tried researching on my phone about my diagnosis… googling neuromyelitis optica.  I struggled initially as my eyesight was quite poor, but eventually found I could make the text bigger, which helped a bit.  I was surprised as to how little information was available about my condition.  From what I found though, it appears I have got off lightly, as the severity of the condition can cause some people to go completely blind and paralysis in all four limbs!  Some people are left with disabilities, whereas others recover back to normal.  There is so little data due to it’s rarity, so my recovery and timescale of recovery cannot be predicted… just a wait and see situation.

Each morning, the neurology team would call by and examine my legs, sometimes retesting my reflexes and assess the strength in my legs.  Also, the student doctors would sometimes stop by to examine me, as my rare condition seemed quite fascinating to them.

After about 3 weeks, I was putting on weight well, but still no feeling or sensation below my waist.  The tamsulosin I was taking was to help relax my bladder to make it easier to empty my bladder.  It was decided that we would try a TWOC, the procedure to undertake a trial without catheter.  The catheter tube is clamped for 4 hours to let the bladder fill, then the clamp is released allowing the bladder to empty into the catheter bag.  After 15 mins, the clamp is put back in place for another 4 hours and the bladder fills up.  This process is called bladder training.  The first TWOC failed, as after bladder scans it showed I was still retaining urine.  A week later, another TWOC was done… this time it was successful.  I was now emptying my bladder.  So the catheter was removed.  I could now eventually get myself into the wheelchair and propel myself to the toilet, transfer myself onto the loo and pee!  At first, I had to run the basin tap to hear the sound of running water… then just sit there and wait.  Then, as if by magic, I would start to pee.  I had no physical control, but it just seemed like it was one of those involuntary actions your brain does for you.  Luckily, I was not incontinent… only by being in the right environment (ie in the loo, door closed and locked, sat on the loo) would I be able to go to the toilet.

Physiotherapy

After around 5 weeks, I was transferred to another ward where there was a physiotherapy team.  Initially, I was accessed to see what movement and strength I had.  This was all done on my bed.  I was given small exercises to do regularly, such as a small ball to try and roll my foot over, a stretchy rubber tube to flex my legs against.  It appeared I had little control over my legs.

After another week, the physio team decided to try and get me standing.  I sat on the edge of the bed and two of the team helped me stand.  I was very wobbly and my balance seemed non-existent.  Then they asked me to try and take a few steps forward.  I tried, but my legs simply would not move.  I concentrated hard, willing my right leg to move forward… eventually, I took a step, my right foot moved forward shakily… then my left foot followed, without me thinking about it!  At this point I was near collapse, and they put the wheelchair behind me and sat me back down.  They explained that I would still have some sort of muscle memory, which explained why my left foot followed my right involuntarily.

Over the next 2 weeks, I would be wheeled to the gym, where I would sit on a kind of exercise bike. This bike was electronic, where it would pedal for you, but you could take over at any time and pedal yourself.  It recorded your time, output, also set the resistance.  I would get a little better each time, going for slightly longer time, with a little more resistance each time.  They would also get me to stand and take a few steps, whilst holding on to a rail for my balance.  It was like a toddler learning to walk!  The biggest problem for me was my balance… or lack of, along with my eyesight which was still giving me double vision if I glanced slightly right or left, or anywhere from centre.  Although my eye muscles were ok, the nerves controlling them were damaged, so were not aligning my eyes correctly whenever I moved my eyes from centre.

Returning Home

April 2018

So, after nearly 4 months, I’m sent home, complete with my very own wheelchair, walking stick, zimmer frame, perch seat, table trolley and bath seat.  I was allocated a 6 week “return to home” support plan, where carers would come mornings and evenings to help me get down the stairs and back up at the end of the day.  Luckily, my upper body strength is returning to normal, so I’m able to haul myself up the stairs holding on to the banister with one hand, then pushing with my stick in the other hand.

The biggest problem I have is my balance and eyesight.  I have to focus on something close to keep my balance, so tend to follow closely to the walls and furniture.  Glancing away from centre either left or right gives me double vision still.  I’m able to walk to the kitchen, but can’t carry things back without losing balance, so I use my table trolley.  I’m frightened to use the kettle as I tend to spill it, or put it down too near the edge because my perspective or sense of distance is messed up.  My wife is out at work early, so she puts me up my breakfast and lunch before she leaves, then I’m able to wheel it to the lounge.

I’m also still experiencing severe pain in my lower limbs, my feet and ankles are very swollen too and I’m rapidly putting on weight.  I’m now nearly 14 stones!  My pain relief medication (amitriptyline) leaves me feeling spaced out, in a daze, in the mornings.  I can walk about 10 – 15 metres until I have to stop and rest.

Since beginning of January, I have had no income as I was self-employed, but the home bills still had to be paid.  My wife and myself relied on both our incomes to manage the bills.  So I continued to pay my share of the bills as normal, including my car which was £366 a month!  My bank account was almost depleted.  I have applied for benefits and am awaiting assessments.  I’ve also asked Ford to buy back my car which is just 1 year old.  I have just had my first lot of medication delivered from the chemist prescribed by my doctor which was sent through from the hospital consultant.  As I have 10 items prescribed, it cost me £88… this is just for 1 month supply!  I looked into this and I’ve now paid for a Prescription Pre-payment Certificate (PPC) for 1 year, which costs £104.

Whilst in hospital, my self-employed self-assessment tax return was due, which of course I couldn’t complete.  I had telephoned the Inland Revenue from the hospital, explaining my situation.  They seemed sympathetic on the phone at the time and told me not to worry.  However, on returning home I found a letter containing a fine for late submission of my tax return!

Update August 2018

So, I’ve had my assessments for benefits, which took nearly 4 months.  I’ve been awarded ISA with a small disability premium, also PIP on the highest rate.  I’ve also sold back my car to the supplier (Bristol Street Motors in Redditch).  I still owed £15,500 and they’ve paid me £13.200, so I’m left with a debt of £2,300.  I’ve applied for a Blue Disabled Badge so my wife can take me places where we can park close to amenities.  I’ve also applied for a free Travel Pass.

I have physiotherapy with therapists who come to my home, every couple of weeks.  They give me exercises to do to try and build up my leg muscles. Although my improvement is very small, I’ve learned what I can and can’t do.  So I’m getting more confident in getting around the house, getting into the car, etc.

I’ve started to practice on my sim racing rig again.  I have very little sensation in my legs and feet, so it is difficult to get any fine control over the accelerator and brake pedals.  My feet keep slipping off the pedals, so I have to glance down on the straights and re-position my feet correctly.  Also my eyesight is still giving me double vision, so I can’t just glance left or right… rather I have to turn my head to keep my eyes looking straight forward.  I’ve managed to rig up some elastic straps to help keep my feet from slipping off the pedals.  The first time I used them I forgot they were on at the end of the session… when I tried to get out of the rig I ended up on the floor!

Update November 2018

Coming soon…