H.J. – Hawaii
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Describe the symptoms and the timeline of the reaction.
I’m a 36yro F registered nurse 5’3 128lbs. I was given the Pfizer vaccine at my work on Dec 28, 2020 in my left deltoid. Within 24hrs I started to develope a “ sloughing” mild rash that started at the corners of my mouth which spread to the corners of my nose and eventually to my eyelids on day 5.By day 7 the rash was gone. In jan I began waking up with headaches that would go away once I got out of bed. I didn’t think much of these headaches, but the persisted for weeks following the vaccine. I treated these with a prescription of imitrex I got from urgent care. They have improved and I haven’t noticed any of this type of headache in months.
Within 48-72 hours I woke to severe muscle spasms that went on for over an hour in my left arm. After the spasms, I had severe left arm nerve pain that radiated down my arm and into the hand. The pain also involved my armpit, chest and scapula. The arm pain woke me up everyday and kept me awake at night for 8 weeks straight. The pain started to improve but I was left with severe weakness, loss of range of motion and scapular winging. Emg confirmed mononeuropathy to the long thoracic nerve abs I was diagnosed with parsonage Turner syndrome. It’s been 6 months and physical therapy, but I am still unable to lift my arm beyond 90 degrees and can’t lift more than 4lbs to the side past 10-20 degrees. Numbness and tingling in hands has subsided but I still have tingling over my scapula and supraspinatus. The sharp stabbing pain under my scapula has always been the worst issue and it continues to this day.
4 weeks after the vaccine I also developed severe left jaw pain that was focused over the mastoid, inside my ear, and ran over the top of my ear and down my jaw. I do not have a history of TMJ pain and the pain started while I was awake. The severe nerve jaw pain lasted 3 weeks and I could barely open my mouth and could not bite down on my left side. I tested my cheek muscle by trying to bite my finger even though it was painful, but I could not get my cheek muscle to engage at all. This seemed strange to me, but at the time I wasn’t sure if the symptoms could be connected. I continue to have an occasional tingling feeling in my neck, mastoid and ear region to this day though the pain did go away.
4 months after vaccine I started to develop extreme fatigue, heart palpitations and the feeling as if someone had hit a tuning fork and touched it to my skull. I had an annual scheduled eye exam that noted left optic nerve inflammation/papilledema that was not present on the previous exam. Papilledema can mean increased cranial pressure and damage to the optic nerve. My eye site did feminism slightly from the last visit, but my peripheral vision was ok still. I have a neuro opthelmologist specialist consult this week.
The heart palpitations have not stopped. It’s been 6 weeks and the heart palpitations are so frequent and don’t seem to coincide with any particular activity or setting. The palpitations, chest pressure, Shortness of breath, and fatigue have brought me to the ER twice. All they can tell me is “ your having frequent PVC’s and we don’t know why”. All my labs are normal, my thyroid is normal, I don’t smoke, I very seldom drink alcohol, I eat mostly vegetarian and it doesn’t matter if I’m stressed or laying down before bed. I have an echo scheduled for this week and a heart monitor for 2 weeks.
I’m so tired all the time now, I could sleep 14 hours if someone would let me. I have a 6 and 2 year old that count on me. My husband is a stay at home dad and I’m the sole provider for our family. I am still working but having a difficult time trying to stay calm with everything that has happened. The arm weakness and hand dexterity issues I have had for the last 6 months have made it difficult to do my job as an operating room nurse. I drop things because my fingers and hand aren’t working properly. I can’t lift my arm beyond 90 degrees. The heart palpitations are terrifying and I’m afraid there may be something wrong in my brain “maybe a pseudotumor cerebri or lesion on my brain”.
My PCP sent my blood for additional autoimmune antibody tests. Everything came back normal except for a anti nuclear antibody test, which was 160. Meaning I have a titer of antibodies that are know to attack itself but the ones specific for lupus or any other common ones were negative. I’m not sure who else may be going through something similar to me but I wanted to tell my story. The story is not yet complete but I would love to update anyone on what the findings are.
I don’t want anyone to think I am anti vaccine. I get the flu shot every year and both my children are vaccinated. I want to shine light on and further investigate stories like mine regarding the new mRNA vaccines. We won’t know there are adverse effects if no one will talk about them or investigate strange cases like mine. None of my symptoms I can control or fake. I have marked muscle wasting and anatomical physical defects to my left scapula and nerve damage. I can’t control my heart and I can’t control inflammation in my brain. Could things all be completely unrelated, sure, but my doctors are not so sure. I was healthy 6 months ago and I would give anything to go back to DEC 28 and decide not to take the “ left over vaccines” they had from people not making appointments.
Thank you for listening. I hope someone will share my story or reach out to me personally.
H.S. - Hawaii"
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