Scott’s Story – Transverse Myelitis & MOG Antibody Disease

This is Scott's story of how he was diagnosed with Transverse Myelitis and then MOG Antibody Disease, which starts in March 2020. Scott created MyMyelitis to help others diagnosed with rare neurological conditions.

Transverse Myelitis Episode

On Monday, I woke up with a slight ache on the left side of my lower back which felt numb. The following day I discovered that it had spread further along my lower back and around my waist. The numbness had also spread up the left side of my body. Every time I twisted or turned my body, it felt bruised.

On Wednesday, the numb feeling started to become stronger, spreading across my chest and affecting my breathing. I had to take painkillers to relieve it and to get through the day. Later that night, I found myself struggling to urinate.
I woke on Thursday morning with pins and needles in both legs and could not urinate. After sitting my exam that morning, I decided to ring the doctor.

The doctor wanted to see me as soon as possible, so I walked to get a bus to the clinic. While walking, my left leg was starting to weaken, causing me to be off balance and limp. Once I reached the clinic, I told the GP about the symptoms I had been experiencing throughout the week. He was unsure of what could be causing it but was very concerned about my inability to urinate. A bladder scan confirmed my bladder was holding at least 1 litre of urine. I needed to go to the Surgical Assessment Unit at the local hospital for treatment.

I arrived at the SAU and had some of my blood taken and an indwelling catheter inserted to release the urine. The on-duty consultant then performed a neurological examination while asking questions about my symptoms and how they appeared.

Waiting for an MRI Scan

I was given a bed within the SAU overnight after having an MRI scan of my spine later that night. While walking into the bed bay area, I discovered I had lost most of the sensation and strength in my legs. I had to use the wall as support and guide my feet visually to avoid falling over.

The next day I had another MRI scan, but this time it included my brain and whole spine. Neurological tests were done throughout the day as my body's strength and sensation worsened. Eventually, I received a call from a neurologist who had reviewed the MRI scans and had a diagnosis.

The diagnosis was Transverse Myelitis, which is inflammation of the spinal cord. The MRI scans have shown inflammatory lesions between segments T2 - T7 and T8 - T11, along with other inflammatory lesions in the brain.

Treatment and Recovery

I was admitted into a neurology ward and treated with IV steroids for five days. The steroids also reduce the inflammation in the spinal cord, which causes aches, pains, and other symptoms.

The IV treatment began to regain my energy and feeling, and my strength began returning to my legs. I could now transfer myself from the hospital bed into the chair beside it, walk short distances with aid (e.g., to the toilet and shower), and stand independently.

The next phase of recovery involved my taking oral steroids (Prednisolone) starting at 50mg. While in the neurology ward, they checked my heart rate, blood pressure, and temperature daily and performed blood tests every other day. I also had a lumbar puncture/spinal tap to get a sample to find a cause for Transverse Myelitis in the spinal fluid.

As I recovered, I could keep my balance with my eyes closed and eyes open. Eventually, I progressed to finally being able to walk short distances and use stairs.

Get Well Soon Cards

One part of my recovery that proved to be an issue was urination. I undertook two Trial Without Catheters (TWOC) during my stay in the hospital. Despite the urge to go being very much there, I was still withholding urine and was unsuccessful.

MOG Antibody Disease Diagnosis

On the 18th March 2020, I was able to return home after two weeks of treatment. I still had the catheter but I was able to walk out without any help.

Two weeks later I had another TWOC which was successful. I was also taught how to self-catheterise daily using temporary catheters which gave me more freedom.

On the 11th May I received a diagnosis of MOG Antibody Disease via a phone call from my neurologist. This changed my diagnosis from Transverse Myelitis to MOG Antibody Disease.

I was reminded in August that I was due an eye test as an annual check-up. On Wednesday 12th August I booked an appointment and went along to the opticians. I mentioned recently being diagnosed with MOGAD and that my eye sight may have been affected.

At the hospital they did not find any lesions in my optic nerves at hospital. But I thought getting the OCT was worthwhile.
The optician found something in the OCT scan which they wanted a second opinion on from my neurologist involving the optical disc. I decided to chase up the neurologist again to tell them to expect the results of scan from the opticians.

He mentioned that my optical disc may have been damaged in a previous MOGAD attack. Although I am not aware of a previous attack happening, the scarring from a previous attack could be what is showing in the OCT scan.

Later in the week I received a letter from the hospital for an appointment with the Eye Clinic. I presume this will be to further examine my eyes to see what has happened to my optical disc.

On the 11th September I visited the Uveitis/ Neuro Eye Clinic and went through another set of eye tests. This included a visual acuity test, visual field test and an OCT scan. The consultant explained that my optic nerve was not showing any signs of damage from a previous MOGAD attack.

Vaccines and Steroid Tapering

On the 13th October I had another telephone conversation with the neurologist. He gave approval to drop the steroid dosage to 7.5mg from the 14th October. I need to drop to and then maintain at 5mg from the 14th November until the next appointment.

The neurologist also advised me to receive the flu vaccine as soon as possible. I went to receive my flu vaccine from my workplace on Friday 16th October.

After having the vaccine, I spent the rest of the afternoon on site at my workplace. Ever since my episode of Transverse Myelitis I have been working from home due to the pandemic.

However, having the opportunity to spend some time back at the workplace showed that I can manage my condition there. This reduced the concerns I had about returning back to work and being able to manage my condition.

On the 14th November I dropped to 5mg of Prednisone as per the guidance of my neurologist. Except some minor joint pain there weren't many side effects of dropping the dosage.

I was to maintain the steroid dosage at 5mg until the next appointment. On the Monday 7th December I met with my neurologist for the first time since being in hospital. He explained that we needed to do another blood test to check for MOGAD antibodies before progressing further.

My steroid taper down would continue to 2.5mg on the 14th December. Then I would stay at this level until we get the antibody test result back.

If the test shows a high/medium amount of anti-MOG antibodies, I will remain on 2.5mg of steroids and go onto a preventative treatment. However, if the test shows low antibodies or a negative result then I will continue tapering from steroids completely.
An MRI scan was also planned for March 2021 to have a 12 month comparison to my initial attack back in March 2020.

On the 17th March I received my results back from the MOG antibody test. The test result was positive, meaning that MOG antibodies are still in my blood. If I tapered from the steroids it could potentially cause another attack.

I went for an MRI scan on the 9th April for a comparison to my MOGAD attack 13 months since it happened. This MRI scan was done using contrast and

The results for the scan came back a few weeks later. It showed improvements from the ones taken in 2020 but did show some places were the spinal cord has not yet healed. Reassuringly there were no new lesions on the MRI scan which shows that the steroids are working in preventing an attack.

My neurologist now wants to try another preventative treatment called Azathioprine. This will hopefully allow me to taper completely from the steroids and prevent damage caused by long term steroid use.

Finishing Steroids and Starting Preventative Treatment Azathioprine

On the 23rd July I got a call from my neurologist to discuss the next steps of treatment. To begin he told me to taper down from the 2.5mg of Prednisolone to 1mg each day for 4 weeks. Once that was completed, we would begin a preventative treatment and taper from the steroids completely. 

I would then begin taking 25mg of Azathioprine twice a day for two weeks before increasing the dose to 50mg per day. After another two weeks I would increase the dose by 25mg again to 75mg twice a day which is where I would keep it providing serious side effects or relapses. 

The plan is to then stay on the 75mg dosage for 1 to 2 years to prevent relapses. I was told the 2 years after the first MOG Antibody Disease attack is regarded as the period of time which a patient is most likely to suffer a relapse. The aim of the Azathioprine is to get me through this period whilst avoiding any long term effects of using steroids instead.

Ever since Azathioprine was mentioned to me by the neurologist I began researching into the treatment. The only issue I had with it was that there was a cancer risk associated with the treatment. Because of this I was concerned about taking Azathioprine for the long term. 

Thankfully the plan is to just be on the treatment for a few years before tapering from all treatments entirely, providing everything goes well with no side effects or relapses. Hopefully all goes well with this new treatment and I will no longer have to worry about the effects of long term steroid use either. 

I tapered down to 1mg of Prednisolone steroids on the 31st July and then after no issues I started Azathoprine on the 16th August with a dose of 25mg two times a day. So far there has been minimal side effects with either of the treatments and I tapered completely from steroids on the 6th September 2021. 

Since then, I have now increased the Azathioprine dose to 50mg twice a day as of the 13th September. This is the level I will be staying at for the foreseeable future. Hopefully if I stay relapse free for the next 2 year or so I may be able to come off treatment entirely. I have also now fully tapered from steroids and will be only using Azathioprine as a treatment going forward. 

 COVID and another MOG Antibody Test

In November 2021 I caught the coronavirus, which was a concern since Azathioprine is an immunosupressant drug which effects the immune system. Despite this, I only had one or two days where I actually felt ill. This consisted of having flu like symptoms and a few of my MOGAD symptoms were also aggravated such as the pressure points in my body turning to aches and having brain fog.

Thankfully this did not last for too long and whilst I also lost my sense of taste and sense of smell, this returned back to normal after around a month or so. Overall, it was reassuring that when I caught it that there was not a big reaction and it didn’t make me really ill. 

In December 2021 I also had another face to face appointment with my neurologist. There I had blood drawn for another MOGAD antibody test and was booked for another MRI scan. Current waiting times for an MRI scan in the NHS are rather long due to the impact of the pandemic so I was told that this may happen in April but so far I have not heard anything. 

Currently my symptoms do seem to be improving, but very slowly. On a day-to-day basis my symptoms do appear to fluctuate between being better and then getting worse but over a long period of time improvements do seem to be happening. I hope this continues into the future. 

The result of my MOG antibody test came back on the 25th January as a 'low positive'. I now have another appointment with my neurologist on the 6th May to discuss the results and what the next stage of my treatments will be.

 Increase in Azathioprine Dose and Complications

At the appointment on 6th May, my neurologist discussed increasing the dose of Azathioprine to 150mg a day from 100mg. 150mg is the standard dose of the preventative treatment, and he wanted to see if that would affect my MOG antibody levels.

We agreed to increase the dose to 150mg from 22nd September. Thankfully there have been no changes to symptoms or side effects as a result of the dose increase.

Shortly after the dose increase, I became ill more often than usual. I caught Covid for the second time and had two infections requiring antibiotics to resolve. Whether this is due to the Azathioprine increase is debatable. Still, I did seem to be getting ill more often than beforehand.

Unfortunately, the second infection began to worsen while being treated with antibiotics. I was in a lot of pain and was referred to the hospital by my local doctors. I ended up back at the Surgical Assessment Unit (SAU) for the second time, my first being the Transverse Myelitis attack in March 2020.

I had various blood tests, urine tests, and an ultrasound at the SAU. They believed the infection resulted from self-catheterisation, and the recently increased Azathioprine dose likely contributed to it. I was kept in the SAU overnight due to my high temperature, which they thought could be a sign of sepsis.

Sadly the timing of the infection was far from ideal. I was woken up at 2 am the following day by a nurse singing Happy Birthday while she did the four hourly observations. The SAU was not the ideal place to spend my 27th birthday!

The nurses treated the infection with IV and oral antibiotics. I was transferred from the SAU into a ward later that day to continue the treatment. During the treatment, I had to stop taking Azathioprine as they believed it might have been competing with the antibiotics.

I was concerned that stopping Azathioprine could have triggered a relapse. Still, thankfully throughout this time, I did not have any issues with MOGAD or any symptoms related to my previous attack.

After two days at the hospital, I was discharged to complete my recovery at home with antibiotics. I was required to stop taking Azathioprine for an additional five days before resuming them at the 150mg dose. Thankfully the infection improved, and I was no longer in pain.

Stopping Preventative Treatment

My neurologist contacted me to schedule an appointment in December to discuss my condition and the recent infection. At the meeting, we agreed to do another MOG antibody test and reduce the Azathioprine dose back to 100mg daily.

We also spoke about the infection. My neurologist mentioned that the one I had was tricky and could require several months of antibiotics to resolve it. Infections are a possible cause of relapses in MOG Antibody Disease, so we also discussed an action plan if the infection did come back and cause issues. We agreed to meet again in April to discuss the results of the MOG antibody test and the next steps.

After meeting in April with the neurologist, I found out my results from the latest MOG antibody test were negative. My neurologist gave me the option of staying on Azathioprine or stopping the treatment with the possibility of risking a relapse. I decided to stop Azathioprine on thr basis that I may not need it if the MOGAD episode was a one-off event. Also I was confident that if symptoms of a relapse were to happen I knew I was able to seek medical help and had a plan prepared if that does happen. 

On 7th April 2024 I had a follow up appointment with my neurologist, over one year since my previous one. The blood tests taken at my last appointment came back with no issues. So far I have not experienced any changes in symptoms since stopping Azathioprine or had any signs of a relapse either. Due to this my neurologist believed that the MOGAD is in complete remission and we decided that I any future follow up appointments would only be needed if I requested them (PIFU). I am still having some bladder issues and the neurologist recomended contacting the urology team again to see if there are any alternative treatments available. Going forwards, my focus is to work on my overall health whilst being alert for any symptoms which could indicate a relapse.