CNS Vasculitis (covid Vaccine Injury)
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My story...
My name is Kayla and I am a 31 year old mother of 2, up until now a working Real Estate Law Clerk, and fully independent and self sufficient.
I received my first dose of Pfizer in May. Shortly after the shot I started experiencing ocular migraines and voids in my vision. I went to lakeridge health and they told me I had a detached retina and sent me to eye doctor who did not even examine me just informed me I was experiencing ocular migraines.
I received second dose of Pfizer on June 25th and the morning of June 28th I woke up with left hand numbness clumsiness, heaviness, lack of fine motor skills, unable to identify what my left hand was touching or holding ect as well as confusion, lack of memory retention and just not feeling right. I contacted my doctor and was told this was nerve damage from the needle possibly hitting a nerve and it would go away and mixed with some brain fog from injury to my nerve. (Public health vaccination program was also notified by my doctor and followed up with me to tell me they diagnosed my case as nerve damage as well and cleared me for further vaccinations) I went to lakeridge for further investigation this same day and I was told it was nerve damage and low potassium and to eat more bananas and I'd be fine. After a few weeks of no improvement I went to a walk in clinic who referred me to a neurologist. This appointment was not scheduled until a few months later so I followed up with the walkin again but received no further advice or help other than to wait it out and nerves heal themselves. Fast forward to September 20th (still no left hand improvement) I was driving and kind of had a slight loss of comprehension of what was going on and I turned left in an intersection into a vehicle and wrote my car off. My memory of the event is very foggy. I followed up with my neurologist who sent me for an mri on October 8th. I was contacted by my doctor to go for another mri as my results were abnormal but they would not give me any further information. Next mri was scheduled for November 1st. I continued working and going through normal daily activities still with same symptoms. On October 20th I was at work and had a grand Mal seizure/ grand tonic clonic seizure for slightly over 5 minutes. I was still on floor convulsing when paramedics showed up. Lakeridge did bloodwork and and sent me home telling me I had low potassium and gave me a prescription for potassium which can only be bought over the counter anyways. November 1st I went for Second mri and on November 2nd my neurologistcalled me to tell me I have strokes riddled all throughout my brain and to get my butt to Sunnybrook hospital in Toronto. The first stroke was when my hand went numb and the mri shows I was having strokes even during the few weeks leading up to my second mri on November 1st. Sunnybrook completed full work ups including multiple mris CT scans blood work angiogram spinal taps (they tried bedside first but I have deteriating disc's so they ended up having to do it by guided ultrasound)... you name it I've been tested for it. They have diagnosed me with Cns vasculitis which is central nervous system vasculitis and is very very rare, so rare they have no medical reference, studies or articles to refer to for diagnosis or treatment. They did brain surgery on the 15th of November for a brain biopsy to determine treatment. (The biopsy revealed perivascular inflammation as well). While they waited the results of the biopsy they went ahead with treatment of CNS vasculitis which is a heavy dose of I.v. steroids. They thought treating me with steroids preemptively was better than waiting for results of biopsy to avoid further brain trauma. After the steroids were down to a level I could take in pill form they discharged me and I was finally able to go home to see my kids. The plan was to have me on steroids and see how it goes. Then they would try to decrease dosage to get me to a point where they could start me on immune suppressants. I have sat at home literally feeling like they sent me home to die. I have no answers, no support, no guidance, no therapy, no referrals for any programs. Nothing. I have had to try and navigate through government programs on my own, health system on my own, I have so many unfortunate side stories that would require a novel in order to actually get my story across. Even during my month stay at Sunnybrook I was subjected to awful circumstances. The amount I get from the government for employment insurance, which I have paid into for years, is not even enough to pay rent and I am still expected to pay for my own medication because the government's assistant provided for medication is basing my income off of last year and will not reassess until I file my 2022 taxes. Yes. My 2022 taxes. So I have my 12 year old son bringing canned goods home from his school in his back pack. All I did was listen to the government and get my vaccine and now my whole life has changed and I'm left all alone and to fight my way through life without any resources or assistance. I never took medication. Now I take shot cups of medication daily. I have been told by doctors that it's unfortunate but you just take what life gives you. Um, no. Life did not give me this, the VACCINE DID!!!! I was told by my physo therapist that my hand will never recover, um how about you be optimistic and help me try? I could continue but just typing this out gets depressing. If anyone has any questions or would like any further information please do not hesitate to contact me.
*** as of March 24th my steroid dosage had decreased to a low dosage. What I thought was withdrawal symptoms (never have I gone through withdrawal but Google said lol) turned out to be my vasculitis slowly flaring back up again. Doctors now have me on immune suppressants as well as the steroids.
Central Nervous System (CNS) Vasculitis
Central nervous system (CNS) vasculitis is a rare disease that causes inflammation of the small arteries and veins in the brain and/or spinal cord. The brain and spinal cord make up the CNS.
The disease affects fewer than three individuals per one million, regardless of sex or age, and is associated with an overactive immune system that attacks the blood vessels in the brain. The inflamed vessel wall can block the flow of oxygen-containing blood to the brain, resulting in a loss of brain function, or stroke. CNS vasculitis can be caused by an underlying autoimmune disease (such as Sjogren’s syndrome or lupus), or it can develop independently.
Because CNS vasculitis is extremely rare, there is much to learn about why it occurs and how it presents.
Symptoms
Symptoms of CNS vasculitis may include:
- New, severe headaches
- Strokes or transient ischemic attacks (mini-strokes)
- Significant forgetfulness or confusion
- Weakness, especially of the limbs
- Loss of balance and gait disturbance
- Vision loss
- Seizures
- Sensation abnormalities (numbness and tingling, especially on one side of the body
Diagnosis
CNS vasculitis is often diagnosed through:
- Magnetic resonance imaging (MRI) scan of the brain with contrast
- Magnetic resonance (MR) or computed tomography (CT) angiography
- Conventional angiography
- Lumbar puncture (spinal tap)
- Brain biopsy
Treatment
Patients diagnosed with CNS vasculitis typically follow with a vascular (stroke) neurologist and a rheumatologist. Most are treated with steroids and other immunosuppressant drugs, which may be prescribed on a long-term basis.
Physical and occupational therapy can be important for patients with motor or gait deficits. Involvement of speech-language pathologists is recommended for patients with speech, language or cognitive issues.
Organizer
Kayla Jones
Organizer
Oshawa, ON