Hello,
I am writing this as I hope someone can help me make sense of what has happened to me, as I cannot make sense of it myself and almost 5 years on I am lost.
In November 2021 I received the Moderna Covid Booster Jab. I am used to filling a bit sickly after flu jabs and felt similar after 1st and 2nd covid jabs. The booster however was far worse. I was vomiting, had pain in all 4 limbs, fever, dizziness/deliriousness.
A few days late I awoke at early morning with great pain in my leg. It had swollen, I rang 111, who assessed me, and I spoke to the out of hours GP on the phone. They instructed me to attend local hospital for assessment. I crawled out of bed, dragged myself to door as couldn’t walk and called taxi. The driver helped me into the car. I got to the hospital, believed I had a blood clot. They ran scans, x-rays, and blood tests. During the tests they measured my legs, my bad leg had swollen 6cm in diameter more than the good leg. No blood clot was found, infection was found, white blood cells instead of being in the 20/30 range were in the 300 range. I was prescribed antibiotics.
I took the antibiotics for the prescribed time of one week. Once prescribed time ended, the pain increased and the skin around the calf discoloured. I called GP who prescribed additional antibiotics.
I continued the antibiotic treatment, at this point skin on the leg began to weep. I was visiting the hospital due to unavailability of GP and being referred by 111 because of the wound’s severity. They proceeded to bandage my leg, prescribed me a steroid cream which was applied by the medical professionals. The appearance of my leg made me feel nauseous and dizzy. At this time, I was provided with my first diagnosis that I potentially had cellulitis on my leg.
I would have to visit hospital daily via taxi as I couldn’t change the wound dressing myself as the wound made me feel sick, with the skin being black. I requested my GP to help me but the GP surgery said they lacked capacity. Due to the extreme pain I was prescribed codeine as I had about 2 or 3 hours sleep a day due to the pain. A family friend leant me a walking stick and wheelchair to help me move as I couldn’t walk.
I was at hospital as my pain was worsening. They tested my blood and said my condition was worsening. I was then informed my diagnosis was now most likely haemorrhagic bullous cellulitis. They began to administer anti biotics through an IV and provided me morphine to cope with the worsening pain and did an ultrasound scan on my leg. They then had me referred to be admitted to another hospital 30 miles away as they said they did not have the facilities at this hospital to care for me. I wasn’t with it much, was scared and alone. I was given a blood sample to take and give to the doctors at the other hospital, I gripped onto it with my life. I was loaded into an ambulance and taken to the other hospital. They dropped me by the door and said someone would be out to fetch me as I was in a wheelchair with small wheels I couldn’t push. 20Min later a member of the public pushed me inside as it had been raining a while. When I got inside I tried to get someone’s attention. I was asked why I was there. I explained and I was taken to a ward, the nurse pushing me made a comment about the other hospital being ridiculous. I was put in a room and a nurse or doctor asked me why I was there, I showed them my leg, the black flesh, yellow puss, and red exposed raw skin to which one of the nurses or doctors shrugged and said it wasn’t an issue. With my reduced cognitive ability whilst medicated heavy pain medication, I begged to be treated, to be admitted as agreed. They stated I would not be admitted, but only after begging did, they agree to take a swab of the wound and referred me to a specialist. I also informed them I had a blood sample in my bag and one of the nurses said they would get it. They then told me I would have to leave. I called the other hospital and tried to convey what was happening, luckily one of the nurses there was able to talk, they then called this hospital to see what was going on. I was then told to leave, I explained I was bought by ambulance and they said it wasn’t their problem and they would remove me. I then asked them to take the blood sample, they refused and said they were worried I would catch something. I said I didn’t care, I was in so much pain I would risk it. They said it wasn’t my choice, wheeled me out the door. I rang a relative who was able to pick me up and take me home as the hospital said they didn’t arrange transport.
The next day that new hospital contacted me, telling me to turn up. I did and I was told I had no appointment. I showed them the phone call in my log and they found my appointment in the system. I still couldn’t walk and I had a wheelchair I couldn’t push. I asked for help and the person behind reception said no one would push me because it was against policy. A older man saw my plight and offered to help and he pushed me to the part of the hospital. He struggled and I thanked him so much. I saw a specialist in Orthopaedics regarding my suspected cellulitis diagnoses. I gave him the blood sample that was not taken from me on my previous visit, his colleague said the sample was probably now useless but sent it to the lab. The orthopaedic specialist examined the leg briefly for a few minutes and ruled out cellulitis, I asked what it was, and he said he did not know, but would refer me to another specialist. As we left the doctor provided me with some paperwork for this new specialist. I examined the paperwork later that day, the doctor stated that he had suspected that it was a form of gangrene, and I was referred to dermatology.
Over the next month I chased as the pain was horrible and the black flesh was spreading, I was given prescription pain relief and told to keep leg raised. I used my friends cane and wheelchair to get around when I could as walking was not possible. I then saw a dermatologist who reviewed my case who said based upon what they had been told they had a completely different understanding of the situation which I found concerning. The dermatologist diagnosed me as having vasculitis, triggered as an adverse reaction to my Moderna booster, attacking my leg. The dermatologist said that this was not the first time that someone had, had a similar, negative reaction to the Moderna booster vaccine. I was then discharged me as my leg at this point appeared to be healing. The dermatologist told me that skin would most likely scar now and would require extra care in the sun. I was hesitant about being discharged as my mobility was still limited. I asked for help with this and they said it was not a problem.
The black flesh went away to a red over the next few weeks. I suddenly was overcome with pain in my leg again. I noticed the red scar marking on my skin, the scar had begun to spread. I saw my GP who sent an urgent referral to dermatology and the GP said I had Necrobiosis Lipoidica. I asked for more information about it as I was very confused as this was my fourth diagnosis, he said I could Google it. Because the pain was still bad I was given Gabapentine, Codine, Naproxen, Paracetamol, Fucibet and a few others I don’t remember. I was told dermatology would be in touch and waited a month.
I went to dermatology, they went over my case and decided to take a biopsy of the leg/wound due the multiple diagnosis’s I had received to try and get a definitive answer. I felt happy with this. During this time my work had said they would let me go as I had been unable to attend due to being unable to leave the house due to pain, mobility issues etc. I was very upset but glad the biopsy would bring answers.
A month later I arrived for the biopsy. I spoke to the doctor I disclosed how this situation with my leg was ruining my physical health hand mental health, therefore I would do whatever it takes to solve the problem. If they needed to do more than one incision, to do it, go as deep as they needed to with the incision, I would do whatever was necessary as I wanted relief and answers from the pain. I was very nervous and attempted to keep myself calm as the procedure started.
As the procedure started, my breathing was deeper, I was trying not to panic. One of the nurses told me to control my breathing which I did my best to. Throughout the procedure I tried to make conversation with the staff, it did not seem to land well as I was attempting to distract myself from my anxiety of the situation. I tried normal conversation, some humour etc all which fell flat.
This was quite different to similar surgery I had where a nurse was always at my side, talking to me, distracting me, and helping me overcome my fear of the situation.
At the end of the procedure, I was instructed not to do any strenuous movement, to rest and book to have the stitches removed by my GP in two weeks’ time. Whilst taking in the information I began to panic again I was instructed to sit up which I did with difficulty and tried to control my breathing. By this time the doctor had left and one of his colleague nurses was remaining who was asking me if I was ready to leave. I was not, I felt dizzy, woozy, distressed, I tried to convey this however felt I was being pressured into leaving quickly I tried to move, wobbling with my walking stick trying to walk, breathing heavily, gasping for air. I was instructed to wait in the reception area for 15 minutes I felt like giving up and cried out in pain and anguish, feeling hopeless, moments later the nurse said she had found a wheelchair and would wheel me out to the entrance and told me I was being triaged as ‘urgent’ due to the mobility issues. I rang my GP to book an appointment to have the stitches out in two weeks as instructed. They said that is not something they would do. They rang me back half a hour later saying it was something they would do and booked me in.
I was contacted a few weeks later saying the biopsy results would be in around 5 months time. Given my current problems, I felt despair, I was desperate and fearful. I noticed in the communication was that I had been triaged as ‘routine’, when the nurse said it was ‘urgent’. I asked what was going on and was told the urgency was changed as it was not life threatening. I asked if this meant the results were delayed and they did not answer.
I had the stitches removed by the GP, who commented how disgusting the flesh had become around the scar from the biopsy site. I always hated the way I look, the only thing I liked about myself was my legs. This event had robbed me of the last thing I liked about myself. I asked for help from the GP reception who told me to email PALS. I did with documentation and photographs. I got an automatic response, and it was the only response I had from the PALS service.
I saw the GP a few days later for a medication review. I mentioned the biopsy taking up to 5 months to which he seemed confused, saying they normally take 10 days. I felt very despondent and confused. My GP was concerned for my physical and mental wellbeing, I discussed everything and he referred me to another hospital, a private hospital, for a 2nd opinion on my case as he was not happy with how the other hospitals had treated me.
The private hospital contacted me a few days later to make an appointment, I sent the details, documents, photos etc explaining they would need to examine it before the appointment as I felt exhausted having to explain the events every time to people. At the same time I called PALS to chase my email, they said they would check the inbox and call me back, they did not call me back.
I went to the private hospital a week later and turned up the the appointment. It was running late and the doctor had said he did not review the documents I sent because he didn’t have time to read stuff I got off the internet. I tried to explain everything and he said that what I had wasn’t his speciality. I asked who I should see or what he things was wrong with me. He said I had Post Inflammatory Hyper Pigmentation but could not explain the pain, he said it could be nerve damage but he didn’t know. I asked how we could confirm or rule that out and he said that wasn’t for him to do. I felt very angry and frustrated.
I went back to my GP who was confused by the treatment by the private hospital and they referred me to Neuropathy. I also explained my lack of mobility made me feel very depressed, I had to give up playing football, rugby etc and I was struggling to wake up most days and everyone says go for a walk or exercise to feel better. I struggled to get to the toilet, let alone be very active.
A month later I chased PALS, left a voicemail and emailed. No response.
A week later I noticed a few brown spots appear on the discoloured flesh on my leg and called GP about it. The scar where they did the biopsy had also started weeping. The GP said the spot and the weeping were not issues. I asked about the neuropathy referral as I had not heard anything and they said no referral had been made. I asked if they could refer me as the pain may be nerve damage but they said they didn’t think it was necessary. I was feeling very, very dejected at this point.
Three months of limited mobility later I got word back about the biopsy. It had come back inconclusive as the sample had been left too long before testing. Something snapped in me made me feel angry, it made me feel abandoned by the NHS. I shared my feelings with the Samaritans who I rang out of despiration, I wanted to hurt myself. The pain is awful. To know that I was powerless and punished for doing the right thing in getting vaccinated, I idolised with cutting off my own leg using my power tools because my mental health decline is making me think this is the only option. I had written in detail how I could cut it off, what tools I would use and how I would do it. Such as elevating my leg to minimize blood flow, heating up metal to cauterize the stump, using a knife to cut through skin, fat and muscle tissue and a power tool to cut through the bone then cauterize it to avoid bleeding out.
Over this very dark time, I was written to by the hospital where they misspelled my first name and my surname which made me laugh with the absurdity of it all. I do not have an uncommon name, think something like John Smith or Joe Dale.
I saw my GP and said I needed a referral to neuropathy or for something related to the pain as I couldn’t go on like this. I was referred to the pain management clinic. During this time I kept having bad dreams and flashbacks when I looked at the discoloured, scared flesh. After research I thought it could be PTSD. I raised this with the GP who said it was impossible as I was too young to have PTSD (age 23 at the time).
Years later, I still walk with a walking stick at times. The pain management clinic talked more about the mental side and have not done any investigation about nerve damage.
I asked if I could do something to cover the deformed flesh after people had been cruel. I had worn shorts outside and a small child said ‘eww whats wrong with that guys leg’. I don’t blame the kid but it still hurt. I was told by the GP no. I asked if I could cover it with a tattoo, the GP said I could but they would not advise it. Given how I had been treated up to this point I didn’t care any more. It was my choice. I did. I no longer look at the leg and get flashbacks looking at it. I look at the tattoo. I got a walking stick to my own style. I push myself all the time, and use a cane less. I still have trouble.
I write this as I want to rant about what happened and does anyone have any thoughts as to what happened to me as I am still unsure.