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PLEASE HELP! Bloodwork results and history provided. - Mystery Diagnosis - can someone help?

karlawhitekarlawhite ListenerPosts: 1Member Listener

I AM PRAYING THAT A GOOD MEDICAL DETECTIVE/DOC...ANYONE... CAN HELP PUT THE PIECES TOGETHER.  I’M READY TO BE HEALTHY LIKE I WAS FIVE MONTHS AGO.   

BEFORE OCTOBER 2018 –I WAS A 47 YEAR OLD WOMAN WITH A FAIRLY HEALTHY RECORD.  I HAD BEEN HEALTHY MOST MY LIFE.  OTHER THAN MY YEARLY MAMMOGRAM, I HADN’T BEEN TO ANY DOCTOR SINCE 2015.  I EXERCISED EVERY OTHER MORNING.  I WAS, AND STILL AM, A VERY HEALTHY EATER. ALTHOUGH I HAD SMOKED, LESS ON AND MORE OFF, FOR 15 YEARS, I HAD RECENTLY QUIT FOR GOOD.   WHEN I DID SMOKE, IT WAS NEVER MORE THAN ¼ PACK A DAY.  I HAVE ARTHRITIS IN MY KNEES AND NECK FROM YEARS OF PLAYING SPORTS, BUT CONTROLLED THE PAIN WITH ADVIL AND TYLENOL WHEN/IF NEEDED. 

OCT 30 2018 – I THOUGHT I HAD EAR INFECTION. THE RIGHT SIDE OF FACE AND EAR WERE VERY PAINFUL.  I WENT TO URGENT CARE. HE SAID THE EAR LOOKED GOOD BUT GAVE ME ANITBIOTICS.

NOV 4 2018 –I WAS OUT OF TOWN.  STILL ON ANTIBIOTICS – RIGHT SIDE OF NECK BECOMES VERY ENLARGED.  REMINDED ME OF THE TIME I HAD MONO.  I COULD HARDLY MOVE MY NECK. IT WAS VERY DIFFICULT TO SWALLOW.  THE PAIN ON RIGHT SIDE OF FACE/EAR WAS GETTING MORE SEVERE.  THE PAIN IS NOW SPREADING THROUGHOUT MY BODY.   I FELT VERY ILL.  I WENT TO URGENT CARE. SHE GAVE ME A MORE POWERFUL ANTIBIOTIC AND MOUTHWASH SO I COULD DRIVE HOME.  BY THAT NIGHT, I COULD SWALLOW.  HOWEVER, I BEGIN COUGHING. 

NOV 5 2018 – COUGH, BODY PAIN AND RIGHT SIDE OF FACE/EAR PAIN WORSE.  I AM FEELING WEAK.

NOV 6 2018 - COUGHING GETS WORSE THROUGHOUT THE DAY.  I CAN HARDLY WALK.  BY 4 PM, IT WAS VERY HARD TO BREATHE.  I CALLED MY HUSBAND AND ASKED HIM TO PICK ME UP AS I COULDN’T BREATHE AND NEEDED TO GO TO E.R.  HE WAS 30 MINUTES AWAY.  HE CALLS 911.   AMBULANCE ARRIVES AND TAKES ME TO E.R.  I’M TOLD I AM SEPTIC.  I’M HOOKED UP TO BI-BAP. 

WHEN ADMITTED, I HAD BEEN TAKING ANTIBIOTICS FOR 8 DAYS.  RESULTS FROM BLOOD WORK IN E.R.:   
*LOW ANTION GAP
*LOW LYMPHCYTES ABSOLUTE, LOW LYMPHOCYTLES %
*LOW MONOCYLTES ABSOLUTE, LOW MONOCYLTES $
*HIGH NEUTROPHL ABSOLUTE, HIGH NEUTROPHLS
*ELEVATED LACTIC ACID
*SLIGHTLY ELEVATED CAROXYHEMOGLOBIN
*-2.5 BE ARTERIAL
*ELEVATED pO2 Arterial

NOV 7 2018 - HOSPITALIST THINKS RHINOVIRUS (I TESTED POSITIVE) MAY HAVE CAUSED SEPSIS AND SAID HE THINKS THAT I HAVE COPD.  I’M SHOCKED.  I WAS SO HEALTHY BEFORE GETTING SICK.  THE PULMONOLOGIST SEES ME IN HOSPITAL THE NEXT DAY AND SAYS I DO NOT HAVE COPD. SHE SAYS LUNGS LOOK GREAT.  I AM ON 2-3 LITERS OF OXYGEN IN HOSPITAL. I AM VERY WEAK.  I’M TOLD THAT I AM VERY SICK AND THAT I DO HAVE SEPSIS AND THE SEPSIS IS AFFECTING LUNGS.  I AM IN THE HOSPITAL FOR ALMOST A WEEK   I AM RECEVING BREATHING TREATMENTS EVERY 6 HOURS.  I AM ON 2-3 LITERS OF OXYGEN, IV ANTIBIOTICS AND PAIN MEDS AS NEEDED.

NOV 16 2018 – I AM AT HOME RESTING. I AM STILL VERY WEAK.  AS FAR AS ENERGY AND FUNCTION, I WAS A FRACTION OF THE WOMAN I WAS BEFORE.  ONCE AGAIN, NECK SWELLS UP LIKE IT DID ON NOV 4.  RIGHT SIDE OF FACE/EAR/NECK HURT.  BODY BEGINS TO HURT.  I BEGIN TAKING REMAINING ANTIBIOTICS GIVEN TO ME ON NOV 4TH.  IT SEEMS TO HELP.  I FINISH THE ANTIBIOTICS.   I LET THE HOME HEALTH NURSE KNOW ABOUT THE ANTIBIOTICS.

NOV 26 2018 – I DEVELOP A PAINFUL RASH ON MY BACK ON RIGHT SIDE.  RIGHT SIDE OF FACE/EAR/NECK HURT.  BODY BEGINS TO HURT.  DOC THINKS I HAVE SHINGLES.  HE GIVES ME ANTIBIOTICS AND ANTI-SHINGLES MEDS.

FROM DECEMBER UNTIL FEBRUARY – 5 MORE TIMES.  SAME THING  BROKEN RECORD.  I FINISH A ROUND OF MEDS.  WITHIN 3-6 DAYS OF BEING OFF MEDS - PAIN RETURNS TO FACE/NECK/EAR THEN BODY.  AND 4 OF THE 5 TIMES – I GET THESE GROSS, LARGE, GREEN/YELLOW, CRUSTY OOZING OUTBREAKS ON FACE.  I THEN CALL MY DOC.  HE CALLS IN ANOTHER ROUND OF ANTIBIOTICS/PREDISONE AND SOMETIMES ANTI-SHINGLES MEDS.  I GET BETTER WHILE ON MEDS AND THEN ALL SYMPOMS RETURN IN 3-6 DAYS OF BEING OFF MEDS.  IN JANUARY FOR THE FIRST TIME, THE INSIDE OF MY MOUTH, HURTS TERRIBLY. IN ADDITION TO FACE/NECK/BODY PAIN – I NOW FEEL LIKE I HAVE STREP THROAT.  IT IS STILL DIFFICULT TO SWALLOW. THE BODY PAIN WAS SO BAD, I WAS CRAWLING OUT OF BED IN MORNING. 

JAN 15 2019 – I AM REFERRED TO AND SEE AN INFECTIOUS DISEASE DOCTOR.  HE SAID I NEED TO SEE AN ENT.  I MAKE AN APPOINTMENT WITH ENT.  THE I.D. DOCTOR DOES NOT REVIEW RECORDS. NO BLOODWORK TAKEN.  NO PHYSICAL PERFORMED. 

JAN 24 2019 - WHILE WAITING FOR MY FIRST ENT APPOINTMENT AND OUT OF DESPERATION BECAUSE THE PAIN IN THE BODY IS GETTING SO BAD, I GO TO CHIROPRACTOR.  HE PERFORMED XRAYS AND BLOOD WORK.  NURSE AT CHIROPRACTOR NOTICES A “FLAP” / GROWTH IN BACK OF MOUTH.  SHE SAYS THIS FLAP IS ON PERINTONSIL? OR TONSIL.  SHE ADVISES THAT I SEE ENT.  I EXPLAILNED TO HER THAT I HAVE AN UPCOMING APPOINTMENT WITH ENT. 

FEB 1 2019-MY FIRST ENT APPOINTMENT.  I HAD BEEN OFF MEDS FOR WELL OVER 5 DAYS AND THE PAIN IN MY BODY WAS AWFUL.  ENT NOTICES “FLAP” OR “GROWTH” AND RECOGNIZS THE DIFFICULTY I HAVE IN SWALLOWING.   HE PUTS IN ME ON ANTIBIOTICS AND STEROIDS.  WITHIN 2 DAYS, I’M ABLE TO WALK TO BATHROOM IN MORNING INSTEAD OF CRAWL.  ALTHOUGH THE BODY PAIN IN BETTER, THE RIGHT SIDE OF NECK IN PAINFUL AND INSIDE OF MY MOUTH IS STILL PAINFUL, RED AND IT’S STILL HARD TO SWALLOW.  

FEB 15 2019 - AFTER BEING OFF MEDS FOR A FEW DAYS, ALL SYMPTOMS REAPPEAR.  I GO BACK TO ENT.  HE PRESCRIBES AND I’M CURRENTLY ON STEROIDS AND ANITBIOTIC MOUTH WASH.  BODY PAIN IS MUCH BETTER.  IT IS STILL HARD TO SWALLOW AND NECK IS STILL PAINFUL.  THE INSIDE OF MOUTH/THROAT IS STILL RED.  THE FLAP/GROWTH IS STILL THERE.     I GO BACK TO ENT NEXT WEEK.

RESULTS FROM RECENT BLOOD WORK TAKEN AT CHIROPRACTOR IN JANUARY ARE FINALLY IN:   
*SLIGHTLY ELEVATED MCH
*SLIGHTLY LOW %SEG
*ELVEATED IgM
*LOW Myoglobin
*VERY SLIGHTLY ELEVATED PHOSPHORUS
*SLIGHTLY ELEVATED CHOLESTEROL
*SLIGHTLY ELEVATED Non-HDL-C

I’M PRAYING THAT SOMEONE CAN PUT THE PIECES OF THIS NIGHTMARE PUZZLE TOGETHER.  BEFORE OCTOBER 2018, I WAS A HEALTHY, 47 YEAR BUSINESS OWNER WHO WORKED AT A 100 MPH PACE.   I WORK AT A CONSTRUCTION EQUIPMENT DEALERSHIP.  BEFORE OCTOBER 2018,  I WAS ABLE TO SERVICE EQUIPMENT, LOAD EQUIPMENT AND ASSEMBLE EQUIPMENT.  I JUST RETURNED TO WORK ON A PART TIME BASIS IN FEBRUARY.  ON MY GOOD DAYS, I’M ABLE TO LOAD EQUIPMENT.  I AM STILL NOT ABLE TO SERVICE OR ASSEMBLE EQUIPMENT.  I WANT TO BE AS HEALTHY AND ACTIVE AS I WAS BEFORE.  IN BUSINESS, I’VE PREACHED THAT NO PROBLEM CAN BE SOLVED UNTIL THE ROOT CAUSE HAS BEEN IDENTIFIED. THIS ALSO APPLIES TO THE MEDICAL FIELD.  ALTHOUGH I PRAY THAT ONE DAY I WILL WAKE UP AND ALL THE PAIN AND SWELLING IS GONE FOR GOOD AND I FEEL AS GOOD AS I DID BEFORE LAST OCTOBER, I KNOW IT’S NOT GOING TO HAPPEN UNTIL THE ROOT CAUSE IS IDENTIFIED. I SURE HOPE SOMEONE OUT THERE CAN HELP. 
ANY FEEDBACK/IDEAS ARE WELCOME.  THANK YOU SO MUCH FOR TAKING THE TIME AND READING THIS. 
KARLA W.

Replies

  • CockneyRebelCockneyRebel Disability Gamechanger Posts: 5,246Community champion Disability Gamechanger
    Hi Karla and welcome

    It does sound like you are having a terrible time.
    We are not medical experts and cannot give medical advice but some of our members may be able recognise your condition and shed some light.
    You do seem to have done all the right things and I hope you do get answers soon
    Please let us know how you get on
    Be all you can be, make  every day count. Namaste
  • LaughingLollyLaughingLolly Pioneering Posts: 87Member Pioneering
    It sounds like your body is fighting an infection and all you can do is help it along. Ideas are: green tea, maca powder, immunoxel, grapefruit juice, suck garlic and ginger alternately, cut milk and gluten for immune boost and keep stress down. Deep breathing cuts stress and health anxiety in two and fools body into relaxing. I hope you get well soon 
    A laugh a day keeps the psychiatrist at bay. 
  • Sam_ScopeSam_Scope Scope community team Posts: 7,647Administrator Scope community team
    Hi @karlawhite
    As @CockneyRebel says we cant give medical advice on the online community and it is important that you don't take any medical advice from the internet over the assessment of a medical professional.

    I am sorry to hear you are having such a tough time, I know that lots of our members have talked about the feelings of shock and almost a grief when they are suddenly faced with illness or impairment. I understand just how frustrating it can be to wait but it is important to listen to the doctors and go through the process of figuring out what is happening to you.

    Good luck with your next ENT appointment, would it be worth printing off your post and taking it with you to explain the journey you have been through?
    Scope
    Senior online community officer
  • DragonflyTVDragonflyTV Listener Posts: 3Member Listener
    edited March 25
    Hi Karla,
    I am a producer at a TV company called Dragonfly. We're producing a new medical series for the BBC which helps patients without a diagnosis get to the bottom of their symptoms. It offers people access to have their case seen by 12 leading consultants from a range of specialisms to try and decipher what the diagnosis might be.
    I'm sorry to see you've been through such a difficult time. Let me know if you're interested in having a chat with us about the series to see if we might be able to help?

    You can find out more about the show here.


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