Maddie

My name is Maddie. I am 34 years old from Adelaide, SA. I am an Occupational Therapist, mother to my beautiful 14-month-old daughter and recently travelled to Vegas to marry my partner.

Before my two COVID vaccinations I was super fit. I went to the gym four or five times per week; I was running and doing CrossFit/HIIT style training. I had an uncomplicated, low risk pregnancy and gave birth to my daughter in July 2021. I exercised throughout my pregnancy and even trained on my due date!

Four weeks after the birth of my daughter, I was walking several kilometres and gradually increased my activity over the next few months including doing a Pilates program and increasing resistance training. At four months postpartum, I was back to my normal training regime and quite close to pre-pregnancy fitness.

I did not want the vaccine as I had concerns around the lack of longitudinal data. My husband also felt something was off and did not want it either but needed to have it to continue in his employment. I folded because of constant government fear mongering and propaganda, plus we love to travel and did not want that impacted. I also felt pressure from some of my family. Some of them are very pro-vaccine and most of them have not questioned the mandates, they just did what they were told.

I had my first Pfizer vaccination on the 6th of October 2021 in my left arm. I was still breastfeeding my daughter. Government medical advice at the time was that the child would receive protection from the breast milk of their mother. I didn’t have any reaction from the first and felt relieved. My second Pfizer vaccine was on 3rd November in my left arm.

I felt fine immediately afterward. It wasn’t until mid-November when I was running on a treadmill and my left foot felt very tight like it was being pulled outward and I was consciously having to pull it back into alignment. Something was not right. It was not painful, but an unusual feeling of tightness. This progressed up to my calf over the next week to the point where I was limited to walking only a few kilometres. I went to the Physio, who assessed me and said that there was no trauma to the calf or foot and recommended a stretching program. I did the stretches, but mostly ignored the tightness over the Christmas period. 

In January 2022 I developed significant pain in the arch of my foot. I wear orthotics, so I booked an appointment with my podiatrist. He did a leg strength test of the muscles and joints in my feet and found that my left foot was much weaker than the right. He said it was probably due to my recent pregnancy and I was given a strengthening program.

About a month later, in early February, I developed a limp and my left foot started to drop. I went back to the podiatrist who performed an inversion exercise where I had to try to turn my foot inward against resistance. I could not move it at all and remember thinking, “Why is my foot not moving, I know I can do this.” I wondered out loud, could it be neurological? He said possibly as it was significant, and that I would require further testing. I also spoke with a friend who is a nurse. She said that this was not normal and advised me to go straight to see my doctor.

My GP did similar strength and resistance tests against my toes and foot. At the same time, she ordered several MRIs to look for nerve impingement in the spine and for brain lesions. It occurred to me for the first time that maybe I had Multiple Sclerosis, however, thankfully everything was clear. I also noted to myself that I had my two COVID vaccines in my left arm and that it was now my left side becoming weak, maybe this had something to do with it. I was referred to a neurologist for further testing.

My first appointment with the neurologist was in March 2022. His first thought was that I might have sciatic palsy, which is when a nerve can become trapped. 

I was referred for conduction studies which revealed that my right side was also impacted with nerve changes that I could not yet feel. As both sides were now impacted, sciatic palsy was ruled out and I was sent for further testing. He then sent me for a lumbar puncture on 8th April which was just awful. I sat there for two hours with two different doctors trying to get it done. My husband was with me and observed more than 50 needles in and out during this time, with no result. I went home very sore and unhappy. 

Because it failed, I was sent for another one a few days later, on 11th April. I was extremely anxious going into this procedure; but this time it was done under X-ray, so it was straight forward. They weren’t painful as I had a local anaesthetic both times, but very uncomfortable and anxiety inducing having to go back after the first experience. After this second one I experienced severe headaches and nausea for days.

Various neurologists reviewed me over the next few months. I went to a neuro grand round meeting, where a panel of neurologist consultants reviewed my case. The panel consisted of a range of medical professionals from juniors up to consultants. I had another nerve conduction study which resulted in a diagnosis of vasculitis – a theory or best guess at this stage. This is an autoimmune condition where the body attacks its own blood vessels.

At the beginning of May I was put on heavy steroids, which made me feel worse. They accelerated my muscle weakness and fatigue and I deteriorated quickly, becoming very weak on my left side. We went on a family holiday to Queensland, which was extremely frustrated. The holiday was affected as I could only walk short distances. I am a new mum and should be enjoying time away relaxing with my husband and daughter and leading my usual active lifestyle. Instead, things were getting harder, like walking upstairs, getting off the toilet, and standing up whilst holding my daughter. I could no longer lift her into her highchair or cot or take her to the park on my own.

After the holiday, I waited a few more weeks as I wanted to give the steroids time to kick in. After a few weeks with no benefit whatsoever, I started wearing a foot brace to keep my left foot in place as it kept dropping (muscles to lift toes become paralysed). I contacted the neurologist again to report the lack of improvement, and this time he referred me for a nerve muscle biopsy. I had the biopsy on 30th May which showed mild sensory loss on my left ankle. 

I couldn’t glean any further information as to what was going wrong, or why. It just added to my stress and anxiety, along with the 15cm wound I was left with from this procedure. The not knowing and being sent for so many tests was really starting to take its toll.

By mid-June, I was using a walking stick just to get around. I felt like I’d exhausted all avenues with podiatrists and neurologists. My husband and I searched medical journals and forums and wondered if I might have a condition called multi focal motor neuropathy (MMN), as my symptoms seemed to match.

On 15th June, my neurologist scheduled me for a six-day in-patient treatment called IV Immunoglobin Therapy (IVIG), which involves receiving an infusion every day for five days. After having to be away from my husband and daughter for six days, unfortunately this treatment was not helpful, which was very disappointing. These treatments are taking me away from my husband and daughter, which has been extremely emotionally taxing. 

On 29th of July, I tried another induction of the IVIG treatment which this time involved a seven-day inpatient stay with various other tests including a second lumbar puncture. I was so anxious about having this done again, after my previous experience. I was so over being poked and prodded and on the verge of tears for most of this visit.

After this procedure I was reduced to walking with a four-wheel walker, my left foot was completely paralysed my boot was keeping it upright, and now my right foot was also starting to drop.

In early September I saw a new neurological consultant with fresh eyes, and she sent me for another round of nerve conduction testing. This time they tested my arms as well. The results now showed a weakening of muscles in my left arm – the arm I had both vaccinations in. It had been almost 12 months since my symptoms commenced and in the absence of finding any other cause for my presentation, Motor Neurone Disease was left, as there is no test for it. This specialist neurologist diagnosed me with MND on 1st September.

MND is often diagnosed by a process of elimination. My family and I were absolutely devastated as this is a terminal diagnosis as it affects motor nerves. In MND, these neurons degenerate and die. This causes the muscles to become weaker and weaker and eventually leads to full paralysis. Over the past 12 months I have gone from being a fit, healthy new mum, to wheelchair bound and I am scared about the future and what it will look like for me and my family.

I don’t however fully accept it and am hopeful that with time and further research that things improve, and my muscle weakness does not deteriorate any further. I am so far out from the demographic who suffer from this condition being only 34 and female. The average demographic of those diagnosed with MND are 58 years and male.

Until now, it has been difficult getting my walker in and out of the car and navigating the stairs in our two-story home. We will likely have to move house soon. Fatigue is the biggest limiting factor.

Because I am essentially paralysed, my husband has taken leave from work and is primary caregiver to our daughter. He may be able to return soon, part-time as we are lucky to have lots of support around us from friends and family and I am fairly independent for now and I now have a wheelchair.

We have questioned whether the COVID vaccine might have been the catalyst for my condition all throughout the journey of seeing specialist after specialist and have encountered differing professional opinions. 

Most of my specialists were open to having the conversation and agreed that the vaccine can trigger an autoimmune response. I have recently been seeing a specialist GP who is a part of the Frontline Critical Care Alliance (FLCCC) who are treating people who have been injured by the vaccine. He 100% believes that my diagnosis is a result of my two vaccinations with my timeline following the vaccinations and my quick decline. He says that the DNA is altered by the mRNA vaccine, and he is seeing a lot of patients who have neurological conditions, particularly Guillain–Barré syndrome. My diagnosis is rare and my MND specialist team cannot do much at this point, I am taking one PBS approved drug and have started another trial medication.

The diagnosis is a shock and absolutely devastating for us. For someone who was so active, fit and healthy and a new mum, we have been in utter disbelief. I am trying to stay positive and do whatever I can to overcome this. It has been a relief to get my NDIS support application approved quickly which will assist with my on-going needs, to relieve some of the burden.

We recently followed our dreams and went to Vegas recently with a group of around 25 of our immediate family and friends and got married! I am currently focusing on easing my symptoms, and slowing any further deterioration, maintaining my quality of life, and keeping as mobile and positive as possible, for as long as possible! I am trying hard to face the cards I have been dealt and live each day as best I can with the love and support of family and friends and my wonderful husband and beautiful little girl!