Functional Neurological Disorder?

Stories from the trenches #8

Another story published by Senator Rennick about a 21 year old female, post-vaccine:

“Firstly, my daughter has had every childhood vaccination with no reaction ever. Neither of us are anti vaxxers.

29/10/2021 First dose of the Pfizer vaccine administered at 11:10 am. By 12:53 pm her left hand was freezing cold, like touching a dead body. She also told me of a pressure type feeling in the back of her head.

2:12 pm on the 29th her left hand went blue/Purple. She told me her elbow felt like it was being grabbed by someone. Gave her panadol and Nurofen as advised by vaccine clinic.

30/10/2021. Left hand still cold but the mottling had lessened slightly. We both thought she was getting better. How wrong we were.

2/11/2021 We attended emergency. The mottling had deepened in colour, the pain in her elbow had worsened and the pain in the back of her head had increased slightly. 5 hours in emergency. They did a round of bloods, an ultra sound of her left arm and shoulder where they found no clot. Sent home after being told they had no idea what was going on. Possibly Raynauds Disease.

3/11/2021 Took her back to emergency that evening. The pain in her left elbow had worsened again as had the pain in her head. Her heart rate was elevated. She also began to lose mobility. I was watching my fit, healthy daughter disappear before my eyes. They admitted her at 11:00 pm that night.

4/11/2021. She was told by the Doctor on the ward that he didn't know what was going on but she'll be fine in a few weeks. She was released. By this stage her right hand had begun to turn purple. She was unable to walk without assistance from me.

5/11/2021 Take her to the GP. My daughter can no longer feed herself, dress herself, wash herself without assistance. The simplest of tasks she cannot do. Her toes and feet have turned purple. She is unable to feel the ground in her left foot. GP just sits there not sure what to say. Referral to the Neurologist with a possibility of Guillian Barre. Says that we can look at exempting her after we have seen the Neurologist.

12/11/2021 Neurologist appointment. Nerve tests conducted. He tends to agree with the GP’s diagnosis of Guillian Barre. He admits her to hospital that day under his care. He notes there is a neuro deficit on the left side. Speaks to her about doing a lumbar puncture. While we were waiting for him to type up the paperwork for hospital, I explained to her in words she could understand what lumbar puncture entails.

Admitted to hospital that afternoon. I was told I would have to leave even though on her previous hospital admission I was allowed in as her emotional support person. My daughter had never been admitted to hospital prior to these two occasions.

Lumbar puncture performed that afternoon. We stayed in contact via messages. Both her hands were claw like by this stage so we tried as best as we could to stay in contact.

13/11/2021 She’s told by the neurologist that her spinal fluid was clear and it was not Guillian Barre. He proceeded to tell her that they weren’t sure what was going on but she has Functional Neurological Disorder (FND). Told her that he would let the physio decide what happens next. Despite asking him again why she was turning purple and mentioning the pain in her head, he said that it didn’t warrant further investigation and that she needs to talk to her subconscious and tell it that she’s getting better.

14/11/2021 She’s told by one of the medical doctors that she is not to have the nursing staff assist her in getting to the bathroom. She is to walk alone. Again my daughter asks why she is turning purple and tells this doctor her head is beginning to hurt more when she moves. She’s ignored yet again and told it’s blood constriction but they don’t know why. They have her on panadol and Nurofen every two hours. It does nothing for the pain in her head or anywhere else.

15/11/2021 I’m allowed in as her emotional support person. I ask the neurologist if he could put it in writing what caused the FND. I’m met with stone cold silence and then no. Again we asked why she is turning purple and again no answer.

The medical doctor comes in after the neurologist. I question the diagnosis etc and say to the doctor that my daughter doesn’t feel like they are listening to her. I ask what in the vaccine has caused this. They don’t know. I ask why is she not allowed an exemption and what the guidelines are. They didn’t know or more to the point didn’t want to tell me. The physio assessed her that afternoon and gave her some exercises to do.

16/11/2021 The neurologist sees her again. Tells her that she’s 21 and doesn’t need her mother speaking for her. She asked again why she is purple and again is told it doesn’t warrant further investigation. She tells him again of the head pain, she’s completely ignored. She’s told her dizzy spells are from low iron but her iron stores weren’t that low, but that’s the cause of the dizzy spells.

17/11/2021 She’s disheartened by the lack of care shown by the doctors. The nurses that cared for her we are most grateful for. She was released and her discharge papers clearly stat the physio would follow up. We have heard nothing. There was meant to be a referral for an occupational therapist, never happened. Again no exemption and no idea if she would recover from this.

24/11/2021 Telehealth appointment with the GP. By this stage she had very limited use of her right hand, mobility slightly increased but the mottling was deepening in her hands, feet and now her knees. Her exhaustion levels are beyond high. The GP asks her what she would like him to do. He had spoken to the neurologist who had informed him that her condition wasn’t that bad. We requested a d-dimer test to check for micro-clotting. He told us to attend emergency for it and that was it. We said to him that we don’t agree with the diagnosis of FND. He referred us back to the same neurologist.

Over the coming days she became exhausted quickly. She was doing the exercises the physio gave her. Still no follow up from the physio. The mottling was deepening and more she moved. the pain in her left arm, hand and her back was excruciating at times. I was lifting her into the bath and out again. The pain in the head started to increase again.

30/11/2021 Her ankles and feet swell. I take her to emergency where she tells them that the GP has told her to have the d-dimer test. She’s told there’s nothing they can do and sent [her] home 2 hours later.

3/12/2021 I take her to a different GP. We are both extremely exhausted by this stage. I explain to the GP everything that has happened and the concern I have around the pain in the head. She lightly touches the spot where my daughter says it hurts the most and she winced in pain. The GP reluctantly orders a CT scan for her brain. I nearly cried in relief that finally someone listened. She took the time to explain the possible cause of the mottling and most importantly reassured my daughter that her symptoms are very real. The CT scan is booked for next Tuesday. We are now possibly looking at Chronic Regional Pain Syndrome.

It’s been an absolute living nightmare. To see my happy, healthy daughter be reduced to shuffling, constant and often debilitating pain. Yet we were ignored. Any mention of the vaccine just swept under the carpet.

This isn’t the end of our story. I refuse to stand by and let my daughter be dismissed for what she’s going through. The lack of any acknowledgement that the vaccine did this to her has turned from heartbreak to determination. And this is the vaccine they’re recommending for 5-11 year olds? They will have a hard time convincing my younger children that this is safe.

My hope by sharing her story is awareness. Awareness that this can happen and is happening Australia wide. I also hope by sharing her story, others who have also suffered and adverse reaction come forward with their stories and feel less alone in their fight for any kind of medical care.

We don’t know what the future holds for her. There is every possibility she may never fully recover from this. We both hope that the government begins to acknowledge that many who are suffering from adverse reactions and end the mandates that are effectively dividing the nation, friends and family.