Age: 58.0
Sex: F
Vaccine: COVID19
Symptoms: Diplopia, Dry eye, Dysphagia, Dyspnoea, Ear discomfort
Clinical narrative: (Last update 07/13/2021 (found a page of hand notes and later entries) Additional symptoms may be in VSAFE entries.  Still need to add additional appointments. Prior to the vaccine, I had never had symptoms of COVID nor ever tested positive for COVID, so I assume that I had no prior infection.  I felt in the best of health, and my only health issues were weight (5?7 195 lbs.) and sciatic nerve and right hip pain that are not present if I walk and do yoga.  I had no abnormal labs, or blood pressure issues or take any medications.  I only take multivitamin (EmergenC Immune and Mega Krill Oil, and presservision (recently added).  My routine activities were daily walk 2 to 3 miles, yoga 2 X per week, gardening, and horseback riding.  Timeline of symptoms: I received my first dose of Moderna COVID Vaccine Feb 4th and my only adverse issue was a sore arm.  I signed up for VSAFE and entered my symptoms as contacted.  I received my second dose of the Moderna COVID Vaccine on Mar 4th at 1:30pm in my left arm with horrible onset of symptoms in less than 24hrs.   I woke up Mar 5th at 4:00a with horrible random sharp shooting nerve pain and muscle pain worse than any pain I previously experienced with the flu or shingles, and I felt like I had been hit in the back of the head with a baseball bat.  The ?head? pain was localized to where the spine attaches to the head.  I have never had a headache of any kind in that location.  I could not go to work nor get out of bed.  I emailed my boss at 11:33a that the random sharp shooting pain seem to have subsided. By the next day all the lymph nodes in my body were swollen and symptoms progressed to where I had numbness from elbows to hands, and knees to feet and pain in my right arm (vaccine was administered in left arm) and neck when I moved a certain way and extreme fatigue and mild to moderate nausea.    I started taking a magnesium supplement to see if that would help the pain. March 11th emailed boss that hands and legs were feeling more tingly than numb now and pain seemed less. March 15th email to boss no improvement, I thought I might have transverse myelitis since that is one thing I found when searching vaccine trials.  The first neurologist appointment that I could find was March 24th.  I reached out to primary care and she was able to see me March 17th.  I described the fatigue as mild and not further improvement to numbness/tingling in hands, legs, feet, and pain in neck and back.   The pain was uncomfortable but not unbearable.  On March 17th, I went to first available appointment with primary care physician and she ordered MRI and lab tests and found no abnormalities.  MRI showed lymph nodes swollen and arthritis in one hip.  I was still able to do my daily walking, but household chores made me feel nauseous.  On March 20th, the sensation of touch came back to my hands and on Sunday March 21st the sensation came back to my feet.  I emailed boss on March 22nd they were mildly throbbing painful and achy and sometimes feel like bugs biting but I was thrilled that the numbness was gone.   On March 24th emailed boss that I had to take the day off the aching and throbbing in my hands kept me from sleeping but still thought this was better than numbness.  Handwritten notes for March 24 say aching throbbing veins March 25, Vein burst in left hand.  This hand may or may not have had prior venous stick during MRI on March 17th, but hand looked fine no bruising or trauma.  I was just standing and talking to coworker when it happened.  I had weird dilation of veins in feet.  I went to the ER and the doctor ordered a blood tests for bleeding disorder associated with Moderna vaccine.  She told me to consult hematologist. She said to come back if I had petechiae or bleeding gums  I took off my socks and shoes and asked her to look at the veins in my feet and she glanced at them and said they were fine.  I was told all lab tests were normal.  Found handwritten notes vein in hand blew, ER said all tests normal. On Sunday March 28th, I emailed boss that my veins now feel like they are burning inside, then feel tight and then get enlarged.  I felt tired but no bleeding gums.  Handwritten notes say burning veins in feet and hand, then feel tight and become raised On March 29, 2021 I took off work again and emailed coworker that my veins were being attack now.  The veins in my feet had the sensation of burning like with IV meds.  Later I had crushing sensation on left side of chest. I went back to ER and told about the veins and had them consult with neurologist and was told there was no treatment.  I was told the X-ray, EKG, and labs were normal.  Later found out when requesting medical records that BUN lab was high.  I also recall complaining of difficulty breathing was treated like I was having some sort of ?vaccine hysteria? and doctor wanted to administer Ativan, but I declined.   My handwritten notes say that the crushing sensations lasted until 4/1.  My handwritten notes for 4/2 state blurry double vision when reading and mono-like symptoms  On April 5th, I emailed boss that ?I?m still alive but have mono-like issues, excess sleeping and blurred vision and at base of skull. Nerve issues were minimal in legs, feet, and hands.  I was still able to do my walking.  My handwritten notes say fatigue.  April 7th, my handwritten notes for 4/7 state moderate neck pain and throbbing at base of skull.  April 8th My handwritten notes for 4/8 state moderate neck pain, throbbing at base of skull, left side of neck pain, lymph notes swollen, arm pain, veins in feet burning again.  Driving home sudden stinging pain left front side of head, tingling in lips.  Sting was a second, tingling lips a few minutes.  April 9th My handwritten notes for 4/9 less neck pain, veins in feet just feel tightening but not burning, lymph nodes went down some, burning sensation in upper spine.  April 10th Handwritten notes Intense base of skull and neck pain, tiny bumps on torso and arm.  Note: these are not visible just by touch?not a red rash. April 12th handwritten notes Not a red rash on torso, burning sensation tiny bumps like when cold. April 13th handwritten notes lump in throat feeling, intense pain left foot arch, bottoms of feet burning no, only a few veins in feet tight and burn now, body itches when walking in heat 80 degrees. April 16th to 4/22 handwritten notes ankles, wrists, fingers, toes, foot arches, and heel increased pain.  Ankles, heels, foot arch painful, both wrists painful, middle finger right hand painful, aching joints, fingers toes.  Sensitivity to light, visual migraines without pain, extensive eye exam and optic nerve said OK.  Inner ear discomfort. Burning sensation in abdomen. Friday April 16th emailed coworkers that it had been 6 weeks and I still feel I can barely get through a workday and the symptoms are so varied day to day but always include nausea and fatigue.   Monday April 19th emailed boss that my vision has been distorted for several days-different than before that I need to see ophthalmologist.  Ophthalmologist said eyes and optic nerve looked OK, but I explained I can?t read clearly, and they feel ?grainy? inside.  I was told not treatable again.  Currently, I recall telling the ophthalmologist that the pain was horrible.  April 23 hot flashes, ear discomfort, lymph nodes still swollen  Monday April 26th emailed boss that I felt like crap, I had issues with inner ears and vertigo but could still hear the same volume number.  Still have fatigue and swollen lymph nodes-some other weird issues seemed better.  Monday May 3rd, appointment with neurologist again.  I went over all previous symptoms and mention I had developed plantar fasciitis and had to stop my daily walks.  I was prescribed gabapentin and he mentioned on patient had taken Medrol.  He had 2 when I first saw him and now had 3.  Thursday May 6th emailed boss that I had to take off work due to extreme nausea after taking Gabapentin.  I only took one day before bedtime but within 3 days, I had severe nausea, crying for no reason, and couldn?t write with a pen in right arm, urinary urgency, and weird dreams for a week.  May 17th emailed for another medical appointment May 19th Reached out to neurologist through portal and asked if I could take the corticosteroids like other patient or had too much time passed.  I was prescribed 4mg Methylprednisolone 6-day blister pack. I had significant improvement (80% reduction in symptoms after 3 days). May 27th, I saw primary care doctor as she had availability when neurologist did not.   I still had I still had lingering issues of pain, swollen lymph nodes, and heart palpitations.  I started a second round of 4mg Methylprednisolone 6-day blister pack and symptoms even more improved.  May 27th Second eye evaluation said dry eyes and to treat with the eye drops that I had already tried and didn?t help much May 27th Massage therapy says right foot contraction during massage is odd.  May 31st, ER visit-odd contractions of middle finger tendon on right hand, crushing tingling sensations on top of head but scalp doesn?t hurt, muscle weakness in both legs.  ER ran thyroid and some other tests and said normal, said I wasn?t having stroke or any medical emergency and was sent home.  May 31st Calendar says chiropractor. June 7th, Appointment with neurologist again.  my pain is nearly gone but I do still have an occasional ?burning? sensation in left arm at the injection site and torso. The veins in my feet, calves, and head still have strange expanding/constricting sensations.  Sometimes have tightening of the tendons/toe issues on right foot. (Note, every time I have medical massage therapy, therapist comments on how odd this foot contraction is in the right foot.)  I have greatly improved mental clarity, but still significant deficits with ?working memory?.  I still have some issues with my ears.  I still can?t do any significant physical activity without the room spinning.  I must be slow and steady in my movements, but I do try to do yoga in a chair and exercises like leg and arm lifts and twists in bed.    I started taking PresserVision AERDS2 for my eyes but found out it significantly helped to calm down the cranial nerves discomfort.  I only take in the evening before bedtime as it increases the nausea if I take it in the morning. June 14th, Appointment with ENT to evaluated difficulty swallowing and hearing issues.  Left ear has some mild hearing loss, more tests ordered for later. June 16th Appointment to evaluate veins.  Tightening feeling in veins in feet, still unusual dilation, aching calves, knotty veins in hands.  June 21st Still issues with vertigo, ears, lymph nodes under chin, burning sensation down spine, torso, arms, legs, veins in feet, extreme fatigue.  Spider veins in legs get worse on left leg.  Annoying twitching in my left eye all day.  June 24th Massage therapy.  She says reflex in right foot is odd.  June 25th Ultrasound on veins.  The annoying left eye twitching seems to have stopped.  June 28th Swallowing test. June 29th Appointment with rheumatologist.  Lots of labs ordered.  She said to start taking 500 mg Tumeric 2X a day which I did.  July 2nd VNG testing done ordered by doctor. July 3rd Medical massage. She says reflex in right foot is odd.  July 5th Started taking youth theory collagen 1,2,3 and noticed less burning, tightening, issues in legs, feet, and veins.  July 8th Modified barium swallow test.  July 12th Appointment with ENT.  Issues with ears appear to be with Eustachian tubes.  Some acid reflux issues with taking Tumeric now.  He said to take Prevacid.  He said to relieve the ?full ear? feeling by taking a deep breath, pinching your nostrils closed, and ?blowing? with your mouth shut throughout the day.  Said to try FLONASE pointing towards the check to relieve pressure.  July 13th Go to drug store and get Prevacid for the acid reflux and Flonase to see if it will open the eustachian tubes.  Within a few hours, I developed a pounding heartbeat and headache and made it home and went straight to bed.   July 14th Appointment with Rheumatology.   I still had pounding heartbeat and headache and could tell something wasn?t right with my blood pressure.  My blood pressure was 137/97 which I think is the highest I?ve ever had. Doctor said the results for the autoimmune showed no evidence of autoimmune disease.  There is some lab that give more fine-tuned results, and she wanted the labs repeated and sent to there.  I made it through my workday and still had headache and pounding heart.  July 15th, I feel OK today-the usual nausea and fatigue and occasion burning sensation with no headache or pounding heart.  The one dose of Prevacid 24hr on July 13th is all I will be taking.  In the past, when I had prior symptoms of acid reflux, I took this medication without incident.   July 15th Appointment with gynecologist. July 16th Appointment with Immunologist.   Summary As time went on, I developed the sensation of bugs biting but thought I was getting better because the sensation returned to my hands and feet.  These symptoms have progressively worsened until I feel the worse than I have ever felt in my life with fatigue significantly worse that what I have experience in the past with mono or pregnancy.  The neurological pain was significantly worse than I experienced with shingles, and the nausea hasn?t gotten better.   Since initial onset, I developed burning in my veins, blurred vision when reading and eye discomfort, followed by inner ear hypersensitivity issues, painful plantar fasciitis plantar and a burning sensation in trunk arms legs, night sweats, hot flashes, heart palpitations, crushing left side of chest, tightness feeling in lungs, tingling lips, difficulty swallowing.  The neurological pain has varied from a ?bug bite, to fire ant, to bee sting? throughout my head and body to almost unbearable by May, development of spider veins on my legs and difficulty swallowing and extreme dizziness-the room is spinning.   I have not been able to work a full pay period since the second vaccine and I am so fatigued that I spend the remainder of my time in bed sleeping or watching TV.   _____ For months I was told there was no treatment and had several trips the Emergency Room with my disturbing vein in hand burst and vein burning and left side crushing symptoms and difficulty breathing sensation.  May 3rd returned to neurologist and was prescribed Gabapentin at night.  The first day is seemed to reduce the pain some, but by the 3rd day the side effects became horrible nausea, crying for no reason, and inability to hold pen in right hand, urgent urination.   I had weird dreams for a week.  At this appointment, the neurologist mentioned that he had another patient that responded to corticosteroids, so I reached back out and asked if I could try it and that is what I was prescribed.   I had significant improvement (80% reduction in symptoms after 3 days) after starting 4mg Methylprednisolone 6-day blister pack on May 19th, but I still had some symptoms and my lymph nodes are swollen and many questions as to ?what next?.   My eyes are much improved with the oral medication.  I reached out to see if eye drops would further benefit my eyes but can?t get a portal or call or response from a doctor.   I didn?t have a cataract at my last eye exam, and I didn?t notice the cataract until after vaccination and these issues started.   At my recent exam, the eye doctor said it was due to age, but my eyes have felt grainy and blurred and vision distorted when I went there, and now I have some improvement with oral medication.   My ears were hypersensitive to noise, but after steroid treatment felt more like when on an airplane, then eustachian tubes became painful and then closer to normal.   My brain, eyes, ears, and veins had a lot of strange sensations during this first pack.  I visited my primary care doctor on May 27th as I still had lingering issues of pain, swollen lymph nodes, and heart palpitations.   I started a second round of 4mg Methylprednisolone 6-day blister pack.  I felt continued sense of wellbeing and not toxic.  The pain continued to decrease and is barely noticeable by the end of the second pack.   However, on May 30th, my lymph nodes finally went down, and I experience weakness in my legs, the contractions in the tendon in my right hand and tightening sensation of the veins and nerves across the top of my head, then one or two days later, I experience them weakness in the right arm with the brachial neuritis.  The weird sensations in my brain are quite disturbing, but hopefully it means it is returning to normal.  The plantar fasciitis pain was resolved and though somewhat ?wobbly? I was able to return to daily walks and do yoga ?tree pose? and in a week the strength is back.  The arm is still weak to bring a heavy mug or cup to my mouth, but I haven?t done any type of strength building exercise.  Today June 7th, my pain is nearly gone but I do still have an occasional ?burning? sensation in left arm at the injection site and torso. The veins in my feet, calves, and head still have strange expanding/constricting sensations.  Sometimes have tightening of the tendons/toe issues on right foot.  I have greatly improved mental clarity, but still significant deficits with ?working memory?.  I still have some issues with my ears.  I still cannot do any significant physical activity without the room spinning.  I must be slow and steady in my movements, but I do try to do yoga in a chair and exercises like leg and arm lifts and twists in bed.    July 13th I still have significant nausea and fatigue.  I still feel tightness in neck lymph nodes. I still have current symptoms cranial crushing tightening sensations like an octopus is on the top of my head-but not painful.  Can feel tightening in front of face and teeth and back of head.  Neck muscles feel tight but don?t hurt.  Issues with eyes-pain and discomfort most in right with only minimal short-term relief with ?Refresh? eye drops.  Burning sensations in lower legs and mostly left arm where injected more then right arm, some burning sensation in torso, occasion biting sensation on extremities, Eustachian tubes still have discomfort that gets worse if I do any faster walking.  Still can?t do strenuous activities like gardening or yoga without getting dizzy and feeling like I can?t breathe.  I used to find walking invigorating and now it is exhausting.   I still must be very careful when swallowing.   The immunological symptoms seem much worse evening and night than during the day.  The addition of youth theory collagen I, II, III supplement seems to have significantly reduced burning sensations.  I still have periods of numbness come and go in extremities.  I still have issues with tendon/toes of right foot.  July 13th evening to July 14th?No 24 hr Prevacid-whatever neurological changes have occurred since March 4th, my system no longer tolerates this medication.  Pounding heart, headache and BP 137/97 the next day.  July 15th had appointment with gyn, no issues found, my pounding heart, headache issues from Prevacid resolved and bp was 120/82.  She suggested that I seek therapy about my longterm health issues after the 2nd dose of Moderna vaccine, and suggested to see if the long haul COVID clinics also take pts with adverse vaccine reactions.  The rheumatologist had suggested this as well.  To my knowledge I have never had COVID.  It was quite discouraging as she told me to do what activities that I could and that I may never go back to the activity/health level that I had pre-vaccine.  Someone spoke with neurologist suggested that I have the N protein antibody test to see if I have COVID antibodies but the neurologist, rheumatologist and gynocologist didn?t know what that was or how to order it.  She said stop taking the Tumeric and not have the acid reflux, rheumatologist said take the Tumeric to see if helps with antibody response.  I still feel in my neck and throat that I have some immunologically going on that needs to be ?turned off?.  I have visible damage to my veins and they still burn and ?tighten?, especially in the evening and early morning hours.   She mentioned drugs to stop the nerves, but I want some thing to stop the antibodies that are aggravating the veins and nerves.