Where to next! Help!

Posted by jenea71 @jenea71, Tue, Jan 8 6:58pm

HELLO,

I WILL START WITH SOME BACK GROUND ON MYSELF. I AM A 47 YEAR OLD, OVERWEIGHT FEMALE. I WAS WORKING A VERY STRESSFUL, DEMANDING AND PHYSICAL JOB UNTIL 5 MONTHS AGO. I HAVE HYPOTHYROIDISM, ASTHMA AND PANIC/ANXIETY, HORMONE REPLACEMENT THERAPY AND ACID RELUX WHICH I TAKE MEDS FOR.

ABOUT 2 YEARS AGO I GOT SLAMMED WITH MULTIPLE INFECTIONS ALL AT THE SAME TIME (STAPH, UPPER RESPIRATORY, SINUS AND EAR) IN THE FOLLOWING 18 MONTHS I WAS SICK 9 MORE TIMES WITH MANY OTHER INFECTIONS. IN THAT TIME I WOULD HAVE EPISODES WITH SEVERE HEADACHES, VOMITING, DIZZINESS AND VISION PROBLEMS ABOUT 2 TIMES A MONTH. I WOULD TAKE SOME IBUPROFEN AND REST AND USUALLY IT RESOLVED IN LESS THAN A DAY. AROUND THE SAME TIME I NOTICED JOINT/BONE PAIN WAS INCREASING EVERY DAY, NIGHT SWEATS GOT REALLY BAD WHILE I WAS FREEZING AND ACCOMPANIED WITH SHAKING.

IN JULY 2018 BACK AND ANKLES STARTED ITCHING SO BAD IT WAS DRIVING ME CRAZY. I ALSO WAS CHOCKING ON MY SALIVA FREQUENTLY WHICH IS NOT NORMAL FOR ME.

IN AUGUST OF 2018 I HAD AN APPOINTMENT TO HAVE THE NEXT FAZE OF MY TOOTH IMPLANT DONE WITH MY DENTIST. HE TOLD ME THAT MY JAW BONE WAS VERY SOFT AND THAT IT WOULD TAKE LONGER FOR THIS FAZE TO HEAL.

SEPTEMBER 2018 I HAD INFECTED SKIN BIOPSIES, SO I STARTED MEDS FOR THAT THE WEEK OF LABOR DAY. THE SATURDAY FOLLOWING THAT I COULDN'T GET TO BATHROOM OR GO UP THE STAIRS. I THOUGHT WOW, I AM REALLY SICK! THEN THE ONSLAUGHT OF SYMPTOMS STARTED- HEADACHE CONSTANTLY, NAUSEA, WEAK, EXTREME FATIGUE, LOW GRADE FEVER, SHORTNESS OF BREATH, INTENSE BONE AND JOINT PAIN, SPLOTCHY RED SKIN WITH LITTLE RED DOTS, ABNORMAL UNEXPLAINED BRUISING, DIZZY/SHAKY/LIGHTHEADED, WOUNDS TAKING A LONG TIME TO HEAL, NO APPETITE, WEIGHT LOSS, NIGHT SWEATS, CHILLS, MY JOINTS AND BONES ARE POPING, CRACKING AND SNAPPING A LOT MORE THAN NORMAL AND THE FEELING OF BEING THE MOST SICK I HAVE EVER BEEN .

OCTOBER 21ST 2018 CAME WITH ALL THE SAME SYMPTOMS ABOVE PLUS PERIODS OF LETHARGY, COUGHING, UNSTEADY/WOBBLY ON MY FEET, STIFFNESS, HOARSE VOICE, INTENSE ABDOMINAL PAIN, CONFUSION AND TIME LOSS, NUMBNESS AND TINGLING, FORGETFUL, SWOLLEN BODY, NOT SLEEPING, PERIODS OF TIME WHEN IT WAS A STRUGGLE TO KEEP MY HEAD UP AND SPEAK AND CHEST PAIN.

DECEMBER 18TH 2018 ALL THE SAME AS ABOVE PLUS COORDINATION ISSUES, MUSCLE CRAMPS/SPASMS, DRY EYE AND MOUTH, EYE SIGHT/VISION PROBLEMS, BRAIN AND MIND ISSUES, CONSTIPATION OR DIARRHEA, LUMPS FORMING ON JOINTS AND BONES AND ITCHY SKIN.

JANUARY 8TH 2018 ALL THE SAME ISSUES. AS I WRITE THIS I AM STRUGGLING TO SPELL WORDS, FORM SENTENCES, CONSTRUCT THIS LETTER AND COORDINATE MY FINGERS TO HIT THE RIGHT BUTTONS. IT'S BEEN 5 MONTHS AND HONESTLY IT FEELS LIKE I WILL BE SICK LIKE THIS THE REST OF MY LIFE!

NOW, ON TO MY DOCTOR VISTS AND TEST RESULTS.
IN THE 5 MONTHS I HAVE BEEN SICK I HAVE BEEN TO THE ER 4 TIMES……THEY ARE USELESS. I WAS DISMISSED, TREATED LIKE I WAS AN ATTENTION SEEKER AND PASSED OFF AS IF I HAD PSYCHIATRIC PROBLEMS.

THE FIRST VISIT ON 9/10/18 I HAD A CHEST X-RAY WHICH WAS CLEAR, HE SUGGESTED I HAD AN AUTOIMMUNE DISEASE , BESIDES THAT, THEY IGNORED ME FOR 6 HOURS AND SENT ME HOME.

THE NEXT VISIT ON 9/14/18 THEY INSINUATED THAT I WAS HAVING PANIC ISSUES AND GAVE MEDS TO "CALM ME DOWN". WITH SOME PUSHING BY MYSELF THE DOCTOR ORDERED A CAT SCAN OF MY CHEST AND ABDOMEN THAT SHOWED A NODE IN MY LUNG AND ALSO IN MY LIVER AND ANOTHER CHEST X-RAY THAT WAS CLEAR AND SUGGESTED I HAD AN AUTOIMMUNE DISEASE AND GAVE ME PAIN MEDS, STEROIDS AND ZANEX. THE STEROIDS WERE THE BURST METHOD WHICH I HAVE NEVER TAKEN BEFORE. I HAVE ASTHMA SO I HAVE TAKEN STEROIDS MANY TIMES, THIS TIME THEY MADE MY BREATHING WORSE AND MADE ME SO JITTERY I COULN'T SIT DOWN OR SLEEP.

THE VISIT AFTER THAT ON 9/18/18 I WAS NEARLY COMATOSE, I COULDN'T WALK INTO THE HOSPITAL, I FELT LIKE I WAS FLOATING LAYING IN THE HOSPITAL BED, I WAS THERE 6 HOURS AND I FELT LIKE I WAS THERE ONLY A FEW MINUTES. THEY DID BLOOD TESTS THAT SHOWED EVERYTHING IN NORMAL RANGES EXCEPT FOR PHOSPHATASE BEING LOW, SLIGHTLY ELEVATED WBC AND GLUCOSE WAS 136. THIS DOCTOR TOLD MY HUSBAND AND I THAT WE WERE FAT AND SHOULD LOOK INTO INTERMITTENT FASTING.

THE NEXT VISIT ON 10/25/18 THEY DID BLOOD WORK AGAIN. GLUCOSE WAS 113, ALKALINE PHOSPHATASE HAS DROPPED EVEN LOWER.

NOW ON TO DOCTORS OUTSIDE OF THE HOSPITAL.
I FIRST SAW MY PCP ON 9/1/2018 BECAUSE I WASN'T FEELING GOOD. SHE RAN BLOOD TESTS THAT SHOWED PHOSPHATASE IS LOW, RBC WAS HIGH, HEMATOCRIT WAS HIGH AND ABSOLUTE EOSINOPHILS WERE HIGH, GLUCOSE WAS 109 AND CHOLESTEROL WAS HIGH. SHE DIDN'T KNOW WHAT WAS WRONG WITH ME SO SHE SENT ME TO AN INFECTIOUS DISEASE DOCTOR.

I SAW THE INFECTIOUS DISEASE DOCTOR ON 9/13/2018. HE RAN A TON OF BLOOD WORK. AGAIN PHOSPHATASE IS LOW, C-REACTIVE PROTEIN IS LOW AND ANCA AND ANA TESTS ARE POSITIVE. HE SENT ME ON MY WAY AFTER FINDING OUT I WAS NOT INFECTIOUS.

I THEN WENT TO A HEART DOCTOR. I COULDN'T WALK, HARDLY TALK OR FILL OUT PAPERS. THEY HAD ME DO AN ULTRA SOUND OF MY HEART AND ARTERIES THEY WERE NEGATIVE.
THE VASCULAR FOLKS SENT ME IMMEDIATELY TO THE RHEUMATOLOGIST UP STAIRS. HE SAID HE DIDN'T KNOW WHAT WAS WRONG AND SUGGESTED I HAD FIBROMYALGIA. AGAIN I CAN'T WALK FAR, BARELY TALK, HOLD MY HEAD UP ECT. HE SAYS TAKE GABAPENTIN. I STILL TAKE THE GABAPENTIN 2 TIMES A DAY AND IT HAS HELPED WITH SOME OF THE PAIN BUT IT MAKES ME A HUNGRY MONSTER SO I HAVE GAINED WEIGHT. BEFORE I STARTED THIS MED I WAS LOOSING WEIGHT AND STRUGGLING TO EAT ANYTHING.

I ALSO SWITCHED PCP. I WENT TO HIM WITH ALL MY SYMPTOMS, MEDS AND TESTS RESULTS. HE SAID, THE SECOND HE WALKED IN THE DOOR I AM GOING TO ORDER AN A1C TEST( WHICH TURNED OUT NORMAL) I WANT YOU TO SEE YOUR PSYCHIATRIST AND I WANT YOU TO DO A SLEEP STUDY. HE THEN MENTIONED THAT HE WANTS ME TO GET OFF SOME OF MY MEDS. I AM THINKING TO MY SELF WHAT MEDS DO YOU THINK I CAN'T LIVE WITHOUT? THE ONES THAT HELP ME BREATH? THE ONES THAT STOP MY NONSTOP PANIC? THE ONES THAT FIX MY THYROID? WTF. HE THOUGHT HE HAD ME SORTED OUT BEFORE HE EVEN CAME IN THE ROOM. HE DIDN'T LISTEN TO ANYTHING I HAD TO SAY. I WENT TO THE PSYCHIATRIST AND SHE ASKED ME WHY I WAS THERE AS I ALREADY TAKE MEDS FOR MY ANXIETY (WHICH I DIDN'T EVEN HAVE UNTIL I REACHED MY 40'S)BUT SHE DOUBLED MY CYMBALTA. I HAVE A CPAP MACHINE NOW, I HAVE USED IT FOR OVER A MONTH NOW AND HAVE 0 RELIEF OF ANYTHING.

ON 9/28/18 I WENT TO AN ONCOLOGIST BECAUSE, WELL, WHERE DO I GO NEXT! SHE RAN SOME TESTS. MY TEMP WAS A LIITLE ELEVATED, EOSINOPHILS WERE HIGH, MEAN PLATELET VOLUME IS LOW, MANUAL MONOCYTES ARE LOW, ATYPICAL/REACTIVE LYMPHOCYTES ARE HIGH AND AGIAN PHOSPHATASE IS EVEN LOWER. THE NEXT TIME I SAW HER SHE ORDERED A URINE CATCH AND SKELETAL SURVEY AND MORE BLOOD. SURVEY SAID NOTHING WAS ABNORMAL, CREATININE IS HIGH AND CATCH HAD A FAINT ALBUMIN LINE. ULTIMATELY SHE RELEASED ME FROM HER CARE.

AFTER MY LAST ER VISIT I SAW A GASTROENTEROLOGIST AND HE WANTED TO DO A COLONOSCOPY AND ENDOSCOPY BUT I CAN'T STOP TAKING MY PAIN MEDS AND IBUPROFEN.

I HAVE BEEN BACK TO THE RHEUMATOLOGIST MANY TIMES. I HAD THE AVISE TEST WHICH CAME UP WITH NOTHING FOR DIAGNOSIS. ANA AND ANCA ARE STILL POSITIVE BUT TITERS ARE LOW. THEY STARTED ME ON CHLOROQUINE I TOOK THAT FOR 2 MONTHS WITH NO RELIEF. THEY THEN WANTED ME TO TAKE ADDERALL TO HELP WITH MY FATIGUE, THAT DID NOTHING. LATEST TESTING SHOWS NO INFLAMMATION MARKERS. I DON'T UNDERSTAND HOW THAT TEST CAME BACK NEGATIVE. IF I DON'T TAKE 1500MG OF IBUPROFEN EVERY DAY I CAN'T BREATH, MY SKIN GETS BRIGHT RED AND ITCHY, I COUGH, LOOSE MY VOICE PLUS ALL THE OTHER SYMPTOMS I HAVE. THEY ARE SENDING ME TO PAIN MANAGEMENT WHICH I REALLY DON'T WANT TO DO. THEY WILL NOT GIVE ME ANY MEDS THAT WILL MAKE A DIFFERENCE, SO I AM MOVING ON TO ANOTHER RHUEY AT THE END OF JANUARY 2019. THEY TELL ME I HAVE FIBROMYALGIA AND CRONIC FATIGUE BUT THERE IS MORE GOING ON.

I SAW A NEUROLOGIST IN NOVEMBER 2018 AND HE SCHEDULED A CAT SCAN OF THE HEAD AND AN EEG. HE SAID MY BRAIN WAS OKAY. SO HE RELEASED ME FROM HIS CARE.

THIS LEADS TO THE NOW. I AM HOME BOUND AND ALONE DURING THE DAY AS MY FAMILY ALL WORKS OR IS IN COLLEGE. MY MOM WAS HERE FOR 2 OF THE MONTHS I HAVE BEEN SICK WHICH WAS HELPFUL. I CAN'T DRIVE, MY BRAIN/MIND IS IN BAD SHAPE, I AM REALLY STRUGGLING WITH ALL THE SYMPTOMS I HAVE ALREADY MENTIONED. I FEEL HORRIBLE! I KEEP IMAGING THAT THIS IS WHAT DYING FEELS LIKE! MY PAIN IS BAD, I CAN'T DO ANYTHING, NO COOKING, NO HOUSEWORK, NO GROCERY SHOPPING AND NO WORKING. I AM COMPLETELY DISCONNECTED FROM EVERYONE AND EVERYTHING. I WANT TO EAT BETTER BUT I CAN'T MAKE MUCH FOR MYSELF. PAIN IS ALMOST ALWAYS A 6-8. I JUST WANT AND NEED HELP!

MY FAMILY DOES WHAT THEY CAN BUT I THINK THEY ARE FED UP. I THINK MY HUSBAND THINKS THAT THIS IS MEDICINE RELATED, ANXIETY RELATED, BEING OVERWEIGHT AND MAYBE EVEN BECAUSE HE THINKS I WANT ATTENTION. TEST RESULTS AREN'T TELLING US ANYTHING TO HELP WITH DIAGNOSIS. I KNOW WHAT IT'S NOT.

I HAVE TONS OF MEDICAL BILLS. I DON'T THINK I COULD AFFORD TO GO TO MAYO OR ANY DIAGNOSTIC FACILITY. I AM THINKING OF GOING TO AN ENDOCRINOLOGIST NEXT. NOT SURE…..SIGH. WHAT DO YOU ALL THINK?

@jenea71 This is what I was going to suggest a endocrinologist then a infectious Dr But as. retired nurse I would start with what you said a endocrinologist

REPLY

@jenea71 – from Tinkerbell – I have a friend that went through many of the things you are going through. It turned out that she was allergic to the cobalt in her hip replacement. I have also heard of people allergic to the metal in their tooth implants. You might want to be checked for metal poisoning from the metal they are using in your tooth implant. My friend was diagnosed at Mayo Clinic.

REPLY

Hello @jenea71, I would like to add my welcome to Connect along with @lioness. I’m sorry to hear you are having a difficult time getting a diagnosis. Connect is a good place to share your health concerns and learn what other Connect members with similar health concerns are doing for treatments. There is currently another discussion for undiagnosed autoimmune diseases that may be helpful to read through here:

Groups > Autoimmune Diseases > Undiagnosed auto immune disease
https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/

I thought this video maybe helpful to let you know you are not alone.

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

REPLY
@tinkerbell

@jenea71 – from Tinkerbell – I have a friend that went through many of the things you are going through. It turned out that she was allergic to the cobalt in her hip replacement. I have also heard of people allergic to the metal in their tooth implants. You might want to be checked for metal poisoning from the metal they are using in your tooth implant. My friend was diagnosed at Mayo Clinic.

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Thank you Tinkerbell but I have already spoken with the dentist and he says the implant is 100% medical grade steel. I will speak with him again and talk to the dr about metal poisoning again. I had already asked the infectious disease Dr if I could have something like that and he told me it would have come up in all the tests he ran.

REPLY
@lioness

@jenea71 This is what I was going to suggest a endocrinologist then a infectious Dr But as. retired nurse I would start with what you said a endocrinologist

Jump to this post

Thank you!

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@johnbishop

Hello @jenea71, I would like to add my welcome to Connect along with @lioness. I’m sorry to hear you are having a difficult time getting a diagnosis. Connect is a good place to share your health concerns and learn what other Connect members with similar health concerns are doing for treatments. There is currently another discussion for undiagnosed autoimmune diseases that may be helpful to read through here:

Groups > Autoimmune Diseases > Undiagnosed auto immune disease
https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/

I thought this video maybe helpful to let you know you are not alone.

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

Jump to this post

Thank you I will check these out!

REPLY
@johnbishop

Hello @jenea71, I would like to add my welcome to Connect along with @lioness. I’m sorry to hear you are having a difficult time getting a diagnosis. Connect is a good place to share your health concerns and learn what other Connect members with similar health concerns are doing for treatments. There is currently another discussion for undiagnosed autoimmune diseases that may be helpful to read through here:

Groups > Autoimmune Diseases > Undiagnosed auto immune disease
https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/

I thought this video maybe helpful to let you know you are not alone.

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

Jump to this post

@johnbishop I watched this video the Jennifer Brea did what a remarkable women she is and thousands of women who have this and men too We all have to keep fighting don't let your disease conquer you Jena 71 Thanks John

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@jenea71

Thank you Tinkerbell but I have already spoken with the dentist and he says the implant is 100% medical grade steel. I will speak with him again and talk to the dr about metal poisoning again. I had already asked the infectious disease Dr if I could have something like that and he told me it would have come up in all the tests he ran.

Jump to this post

@jenea71 – Good Luck

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