N.H. – Tennessee
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Describe the symptoms and the timeline of the reaction.
"I received my first Moderna vaccine Jan 15, 2021 with only some Arm soreness following. I took my second injection Feb 12, 2021. I have been struggling with Medical issues since right after my 2nd vaccine.
Before all this I was fine. I am a mother of 3 engaged and just bought a new home. I only had asthma which was controlled with medications, with no major attacks in 4-5yrs. When I received my injections I was working full time as a Physical Therapist in home health setting and last year as University Professor prior to COVID and Budget cuts. I worked out/ jogging 3-4 miles 3x/ week. I decided to get the vaccine to do my part as a health professional and try to protect my patients.
Two days after the shot I had nausea and vomiting then next day respiratory issues which I thought might be asthma flaring up. By Feb. 17 I was admitted to Union City Baptist hospital with respiratory distress and within a couple days breathing deterorated more and I had to be intubated and placed on the vent. I was weaned off but then would start to deterorate again and ended up being intubated 3x and on vent during this stay.
The last time i was placed on the vent they life flighted me to larger hospital Mercy/lourdes in paducah, KY. They weaned me off but were having trouble due to laryngospasms. I started to have muscle cramps in right calf and nurse said probably because I'd been in bed to long and immobile. I stablized and then was sent home on continuous 2L/min of Supplemental oxygen via Bi nasal cannula as o2 study showed sats dropping with minimal activity. Next couple days leg cramps got worse. Went to local hospital HCMC and life flighted out to larger hospital St. Thomas for DVT, possible PE, and respiratory distress. This time I was on biPAP on ventilator mode and didn't have to be intubated. They brought up my respiratory distress appeared to be tightening in throat not chest and they thought this was due to vocal cord dysfunction. They also ultrasound(US) leg and said it wasn't DVT and that must have been mistaken in my PCP US. They said I didn't need blood thinners and took me off. I questioned this and the MD reassured me he trusted their US. Once stablized they sent me home and advised me to see an ENT/voice specialist. After leaving Hospital I went back to my pcp who confirmed one again I had DVTs in RLE and put me back on blood thinners.
During this time home I received home health for PT, OT, SLP and Nursing. I was very weak and still having muscle cramps and twitching/ random fasciculations. I also started having more Gastric issues with nausea, vomiting, and severe bloating. Literally after eating I would look 7-8 month pregnant. Gained 25lbs in the few weeks I was home. My PCP sent me to ER which I went to JGMCH and they did abd CT and blood work and said there was no fluid/ abnormalities and nothing was wrong after mistaking me for a woman being in labor/ late pregnancy. They also left IV in my arm which I didn't realize until I got home!
I continued to have GI issues and also felt dizzy, started having more chest pain and felt like having heart palpations with tachycardia, BP going up and then dropping, along with periods of sweating and being cold and clammy. Went to see cardiologist who said everything checked out nothing other than sinus tachycardia which he thought was from the breathing stuff I was having.
Then one day I thought I had to have a BM and after I was done noticed that the toilet was full of blood. I took a few steps to try to go get my phone felt really dizzy and fell hitting my head on wall then fell on the right side of ribs on tub then hitting ground. I layed there for a little bit until I felt better and went to get my phone to call fiancé to take me to hospital. I went to ER and sent me out via life flight due to not having GI and concerns of bleed and possible heart/ breathing issues. I went to St. Thomas in Nashville, TN on oxygen via mask and then under went Colonoscopy and EGD to try and find source of GI bleed. They didn't find source of bleed only a polyp which they removed. They said bleed was probably due to blood thinner. While in recovery I started having trouble breathing and tightness in throat and they ended up having to intubate and put me on vent. They determined this was due to VCD (vocal cord dysfunction) and said I needed to see an ENT/voice specialist. I told them I had already made the apt after last time being told that from them and my apt. with Vanderbilt Voice clinic was just in few days. They stablized me and released me.
I saw ENT who had me see there SLP who did Laryngoscope and showed me how my VC were adducting and closing. She showed me how to do exercises/ breeding techniques to help open VC when tightness came on. ENT stated that this would prevent from needing to be intubated.
Things didn't change much in the next week all about same. I went to my pulmonologist follow up. When his NP saw me and listened to lungs and saw I was struggling to breathe even in 2l/min O2 voa nasal cannula, she discussed with my pulmonologist and they did a direct admit to CCU at the local hospital HCMC. I stayed in CCU for a few days and breathing improved and moved to regular room. However by next day breathing worsened and taken back to CCU where I was intubated and on vent again this time with a NG feeding tube. Before putting me on vent they said I would need to go to larger hospital for more care and I requested to only be sent to Vanderbilt. This is the 3rd time I had requested to go to Vandy as they are supposed to be the best in the area and a research hospital. But the other 2 times they said they were too full. Thankfully this time I woke up and was in VUMC.
Over the next several days they tried to wean me off the vent. However they were not having success and said I was having laryngospasms preventing exubation. So after the 3rd try they decided to do this in an OR just in case things went bad. Well they tried over and over in OR and under sedation my vocal cords were closed and spasms prevented exubating so they had to do a tracheotomy. They told my family and me after surgery it couldn't be VCD because when one is sedated VC relax and it is consciously controlled and mine didn't. I spent a little more time on vent and they changed out the hold NG TUBE for a DobHoff NJ tube as I was still not tolerating food even through tube due to Nausea and needed a source of nutrition.
After all this with trach in place and fully waking up from being on vent and becoming more coherent I noticed I had poor sedation in both legs and significant difficulty moving them. They called neuro who evaluated me and saw no findings upset than absent gag reflex but stated they didn't more any major neuro findings that needed forget follow up. Over next few days I noticed I couldn't sense when bladder was full and could not initiate urination when the catheter was removed. I also was having a steppage gait, bilateral foot drop with poor proprioception, decreased sensation and motor control. I had muscle cramping and fasciculations and significant BLE muscle atrophy. Neuro came back and evaluated again. They ordered CT/MRI with and without contrast (premedicated as I was allergic to dye) and found nothing of significance to be source. In clinical exam they noted hyperreflexia, babinski, clonus, and abnormal testing. They mentioned neuromotor disease /ALS however with the acuity of it were unsure. So they left it as maybe due to critical myopathy and will need to see how it progresses with rehab and follow up with neuro on Outpatient setting.
I went into inpatient rehab with PT, OT, and ST. I spent couple weeks there with some increase in stint and mobility and some increased tolerance to food but mostly tube feedings were needed. Also had gastric emptying study showing gastroparesis. During stay also had an episode of laryngospasms.
I went home and continued home health for a couple of weeks and then started Outpatient PT and then started to go to all my specialist follow ups within Vanderbilt medical Center and associated with VUMC....
Gastrointerologist- taught on diet for gastroparesis and said to continue meds and wean as able from tube feedings. After a week or so being home I was eating more than 50% of meals not needing tube feeding and tube stopped working so it was pulled.
Urologist- performed a urodynamics test which showed significant decreased neural activation from nerve to bladder. They recommended possible bladder stimulator delegating in neuro diagnosis but would wait. Until then advised self catheterization to relieve urinary retention.
ENT/Surgeon- they performed Laryngoscope again and noted VC adducted still and this time saw VC were fasciculating. ENT is sure source of Laryngospasms are neurological and stated trach was in for foreseeable future unless source could be determined by neuro. They wanted to see what neuro said to determine their course of care with trach. due to the neuro cause.
I had EMG/NCS in which MD/resident started NCS was normal showing no neuromotor demylinatong/peripheral disease (like GBS, MS, etc) but EMG showed fasciculations/ abnormal muscle electrical activity pointing to CNS origin of problem.
General Neurologist looked at EMG/NCS and other tests and performed clinical exam and stated I needed to be seen by neuro who a specialized in a specific area that I needed based on how I was presenting. He said he believes it to be like a COVID sequel from the vaccine mimicking a neuromotor disease or that the vaccine has for some reason triggered the actual neuromotor disease. He said he is referring me to Neurologist who specializes in ALS and neuromotor diseases as this appears to be closely following ALS pattern.
Also in this past month at home I have noticed more muscle/ joint pain, more muscle twitching and jerking and itching. Strength has improved some and legs have filled back out from atrophied look but it appears that where muscle was lost is now fat and/or swelling as it is not solid and well defined as before like muscle. Motor planning and sequencing and functional strength is not improving. Parasthsia from hospital has improved. I've noticed trouble with coordination and hand to mouth problems at times. Bilateral foot drop has pushed me to get fitted for braces (AFOs). I have progressed from a walker to cane but this is still very unsteady and in larger stores I have to use a wheelchair. My sats have been ok without needing supplemental O2 but there are times I feel breathing is harder especially at night.
So now I'm at home and awaiting to be scheduled with Neurologist who specializes in ALS/neuromotor diseases.
Here's my story and updates I've made on a private group on fb all through this journey if you want to follow my story..
N.H. - Tennessee"
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