Age: 51.0
Sex: F
Vaccine: COVID19
Symptoms: Back pain, Blood test abnormal, CSF protein increased, Constipation, Crying
Clinical narrative: April 21 - Second Pfizer vaccination Fatigue  May 2021  Fatigue ?.not respiratory? just exhaustion Mid- May had episodes of crying for NO reason. Multiple days in a row. Fatigue after exertion.  I could exercise or go to events, but had a day of recovery afterwards.  Strange pressures and sensations began.  Also, back pain. I hired someone to help me clean the house. Chronic Insomnia June 21 Extreme pressure and odd sensations in limbs - symmetrical June 10 - (husband's birthday so I remember it well) Pressure across my nose and cheeks pressure and odd sensations in both arms and legs.  We had friends for dinner and my face felt almost paralyzed and moving my mouth to speak was a tremendous effort.  I had to go to bed.  Days of pressure, followed by more normal days, but always a day of recovery after the most basic tasks?grocery shopping, meal prep I did keep walking, even paddle boarded a few times?followed by a day in bed from fatigue  Chronic Insomnia July 2021 July 4th (holiday,  so I remember it specifically) Went to a fair ground and had all the same odd pressures?face, arms, legs.  I specifically remember the feeling that I was being pushed DOWN, particularly in my thighs as I tried to walk  This was repeated intermittently over this month.  I did go with friends on a hike, pain in my right leg (this could just be me 50 year old knees) but I still had that odd symmetric pressure and feeling of being pushed down.  I was in bed for two days after this trip.  Many other days of similar odd sensory issues.  Chronic Insomnia August 2021 July 20 - Aug 7 Earlier to bed. Kept trying to trail walk. Walking began to slow down. I would go the same distances but it would take longer.  Face pressure was almost daily. Extreme fatigue?not the same as being tired.  Later in the day I would have terrible sensations in my arms and legs.  Continued to be symmetrical.  Late Aug - Up early to take my son.  While driving there, the pressures and odd sensation shifted from being symmetric to being on my left side.  It was terrifying and extreme.  That day I was able to get a same day sick appointment to see a doctor in my primary care practice.  He did blood work which showed that I had low B-12 and referred me to a neurologist. Ordered Brain MRI which I had on Sept 9       Chronic Insomnia  September 2021 My walking got slower and slower.  What used to take an hour took an hour and 15, then and hour and 30 My gait was ?off? but I was not falling. I started waking ½ the distance and continued to have fatigue and long recovery  9th - 1st Brain MRI  16th - Had my first appointment with a Neurologist Abnormal neurological exam, weak reflexes on right side  Ordered VEP, ORP, OCT, EMG NCV Prescribed Tramadol for insomnia (little effect) I stopped taking this very soon after prescribed  20th - EMG NCV with Dr- Findings were normal - still feel weaker on right side and slower reflexes  20th - Extreme pain behind my eyes - felt they were looking to extreme left or right when focused straight ahead  *Sept 21- 24 - Extreme Headache and body aches, slept well - felt I was coming down with something.  No fever, no other symptoms.   Over the course of a week, my gait changed drastically Sunday Sept 26 - Stumbly in the morning.  By afternoon I found my hiking sticks and used them to stay upright! I felt just so tired and slept better.  Sept 27 and 28 - Walked with canes, continued to work  **Sept 29 - Used two canes.  Felt as if I was falling one way then the other.  Walking down hall to class my legs became completely spastic.  Walked more and more slowly.  I had to hold the wall, my walking resembled a baby giraffe trying to stand, then could not make my legs continue to ?go?.  My husband had to come pick me up and help me into the car. We called the neurologist, talked to doctor on call who said I was having a classic MS relapse and I needed a high dose steroid.  Dr. called later and said that I would not be getting steroids and I should go to the ER.  This was the height of the Delta variant and the hospitals were full!  I did not want to go but had no options.  I spent 19 hours in ER and initially doctors were testing for MS and thought it was likely.    Hospitalized from Wednesday Sept 19 - Sunday Oct. 3 MRIs of brain, cervical spine, thoracic spine, lumbar, pelvis Blood work Urinalysis Lumbar Puncture (showed protein of 55)  I left with no answers.  I was just told to wait until the Lumbar Puncture Results were in.      Chronic Insomnia unless ?sick?   Some other unusual sensory issues of note:  Feeling that something is touching my face near my temple. Feeling that something is pushing up on my cheeks, Feelings of being pushed down in legs,  Feeling like my arms are disconnected from my body, numbness and tingling Feelings that my hand won?t respond to commands. Unable to ?rotate? a hair brush Trouble texting and typing (ongoing this whole time) Can?t tell what fingers are doing and don?t know what I?m looking at?  Extreme finger/hand tremors Feelings of extreme, painful cold  in hands (thumb and index finger) Feeling like I need to stretch.. Back, hands, arms Feeling like my legs are wrapped in something tight Feeling like my legs (usually knees to ankles are electrified)?current running up and down) Partial numbness in all extremities at times  Full numbness in toes on left foot, other parts of feet - intermittent  Temporary bout of constipation in Oct.  Trouble at times doing all of the following: opening plastic vegetable bags, putting lids back on, touching the correct place (I put toothpaste up my nose once trying to brush my teeth)   October 2021 The waiting game.  Waiting for results, referrals for VEP, OCT, ERP, follow up. Meanwhile my symptoms affected every aspect of my life. I could not work the month of October. I retracted my acceptance of a new job for fear that I could not physically nor mentally do it.  I retained my current teaching position, but could not go to work.    See list of all symptoms above? something EVERY SINGLE DAY  Chronic Insomnia unless ?sick?   November 2021   All symptoms continued, intermittent, but some EVERYDAY - Walking improves at times, but is never normal and I walk with a cane or rollator.    Late Oct/ Early Nov -  VEP and ERP   *November 14 - Felt like I was getting sick - Extreme body aches, jerks, exhaustion - had to go to bed for 24 hours. - no fever - Could not stay awake, achy hands  Nov. 18 - Follow-up with Dr - see note - mentions possible CIDP but also had some abnormal reading in VEP and ERP - again suggested OCT?which is referral person had been unable to get scheduled. He wants me to repeat Lumbar Puncture, repeat EMG, and have an OCT - finally scheduled for Dec. 20th and 21st - still not Lumbar puncture scheduled? as of today 12/17/21     Nov 24 - Extreme disconnection of hands and arms - shaky arm movements - trouble putting lid on pen.  It was hard for me to write or type.  Over Thanksgiving break Nov. 25 - Dec. 29 - I had disconnected arm feeling, feeling as if something was on the back of my hands and arms.  I slept better.  Totally fatigued.  I did one day of chores and had several days of recovery.  Very shaky legs, 2 days of extreme finger twitching, unable to focus on why my fingers are doing when I text type.      Chronic Insomnia unless ?sick? December 2021 **Dec. 1 - Walking into school (using canes) felt like I was falling side to side, got slower and slower - jerky, same as Sept 29 - Had to be transported in a wheelchair  -  Calls and messages to neurologist did little except tell me ?we are trying to get you a diagnosis?  Meanwhile tests are not all scheduled.  The wheels are moving so slowly and now that I?m reading about CIDP I know that timely treatment is so important. Dr. referred me on Dec 1st.  He is a neuroimmunologist.  I have still not gotten an appointment with him.    Meanwhile I reached out to another neurologist during this month and am hopeful for an emergency appointment at which ALL testing can be completed or analyzed and a diagnosis made and/or treatment started.    Continual tingling and electrical feeling in both legs? symmetrical?  Chronic Insomnia unless ?sick? Still waiting on repeat Lumbar to be scheduled Still waiting on an appointment to be scheduled with Dr.   Dec. 20  OCT with Neurology - All within normal range Repeat Nerve Conduction/ Muscle Stimulation with Neurology - All within normal range UPDATE DEC 21 -  I have been walking much better in my house.  Uneven terrain, cracked sidewalks, even patterns on surfaces cause me to have a really hard time with foot placement and balance.  Even turning out the light when I  am leaving a room can alter my gait.  First steps after sitting or lying are difficult.  My legs feel heavy and I have a feeling of being pushed down.    Dec. 22 - Follow up with Dr. scheduled at Neurology 8:30