- CASE FILE
Mobility is getting worse each day. 42 years old and having a hard time walking! Autoimmune mystery
ABOUT THIS CASE FILE
Around the age of 2, I was sick with a fever and prescribed a medication called “Actifed”. I experienced hallucinations for several days straight and was determined to be allergic to this medication. According to my mother I was brought to a neurologist to determine if this would cause any long term neurological damage. I do not know what tests were done, I do know that I experienced mild and random hallucinations a few times after this main incident as a child.
At Age 7 I had Scarlet Fever
I was diagnosed with Attention Deficit Hyperactivity Disorder in my late teens early 20’s
At age 27 I experienced my first bout of Alopecia Areata, It presented as several quarter sized bald spots in the back of my head. I was prescribed a topical steroid and told it was brought on by stress.
at age 28 I was experiencing terrible pains in my mid-section, Went to the doctors and they sent me to get an ultrasound abdominal area, I was found to have gallstones and scheduled quickly for surgery. I had my gallbladder removed.
Shortly after I began having severe fatigue, I went to my primary care physician and was told it was due to depression (I did not feel depressed), however I was prescribed Zoloft, given a few blood tests to check for Lyme. At this time I had elevated liver function and tested positive EBV antibodies, Was told that this just meant I had the Epstein Barr virus sometime in the past.
Discontinued my use of Zoloft due to side effects.
December of 2006 age 29 I gave birth to my son via C-Section.
The following week I was hospitalized due to a strep infection that caused a rash all over my entire body, was given medication and strep infection cleared up
February of 2007, I fell down my basement stairs causing 4 compression fractures in my thoracic spine, my treatment was to rest, not carry anything heavier than a gallon milk container and I was put on opioids for pain management, Percocet to be exact. During my treatment the Percocet was no longer alleviating my pain, doctor suggested Oxycontin, I declined and took myself off everything immediately. Suffered with withdraw symptoms.
Immediately following this, I began to experience widespread joint pain, specifically manifesting in my knees. The pain was so severe that my knees would buckle from the pain. I was convinced I had a major issue in my knee. Doctor suggested an MRI, I received the MRI and there was absolutely nothing wrong with my knee. At this time the doctor referred me to a Rheumatologist.
Went to the rheumatologist who checked me out for various issues. I was looked at for lupus, rheumatoid arthritis, etc. bloodwork was normal. The Rheumatologist sent me to a Neurologist where I received an MRI of my brain to rule out MS. Scan came back fine. When I went back to the Rheumatologist he diagnosed me with Fibromyalgia. At this time Fibromyalgia was not regularly accepted as a viable diagnosis by many people in the medical community. I was frustrated, felt like the diagnosis was given to me because nobody knew what was really wrong. I had taken Lyrica and Savella for my fibro diagnosis. Both medications I stopped taking shortly after because the side effects were worse than the Fibromyalgia pain I was experiencing.
During this entire process I had been made to feel like my experiences were all in my head by the various medical professionals I was working with. I can’t tell you how many professionals were telling me I was depressed and that was the reason I was experiencing the pain. No matter how many times I told the doctors that I wasn’t depressed before, but I am now as a result of the pain and treatment I am getting. At this point my frustration was so high, the feelings of pain were so real, yet nothing was showing up on testing. I began to truly question myself and if I was psychosomatically creating this pain. After this experience. I refused to go to the doctors for 8 years if I was sick I would go to a minute clinic to get medication.
During those 8 years, I experienced strep throat every year like clockwork. I had several more bouts of Alopecia Areata, migraines, continued to feel pain, began to experience terrible GI problems, was unable to eat without immediately going to the bathroom. I experienced bouts of insomnia and bouts of hypersomnia and had constant fatigue. Over the years I have experienced brain fog, short term memory recall issues and began having trouble finding my words more often than ever before.
2014, I experienced a strange occurrence where my left hand began to lose feeling in it, starting from my pinky and ring finger. I was driving home at the time and by the time that I got to my home, I had lost feeling in my left arm and the left side of my face felt numb. I started to experience extreme light sensitivity and a horrific pain behind my eye. I went to the hospital was admitted and tested and it was determined that I suffered from an ocular migraine. After the hospitalization they recommended a follow up with a primary care physician I did not have one, so I didn’t follow up.
this is when I finally found myself a primary care physician and decided to tell him what had been going on.
2016 I began experiencing weight gain and debilitating fatigue. I could barely keep myself awake past 3pm and decided It was finally time to find a primary care physician and go back to a doctor I went back and chose to see a DO, he was a fantastic doctor who listened to me, he ordered a large group of tests.
7/13/16 – Blood Test Results
CBC with Differential / Platelet – Normal
Comp. Metabolic Panel (14) – Normal
Lyme AB / Western Blot Reflex - Negative
Lyme IgG/IgM - <0.91
Lyme Disease Ab, Quant, IgM - <0.80
Mono Qual W/Rflx Qn – Negative
TSH – 15.1 – HIGH
Thyroxine (T4) – 7.9
Vitamin B12 - 514
Folate – 9.9
Vitamin D, 25-Hydroxy – 14.2 LOW
After the blood tests it was determined that I was experiencing hypothyroidism and a vitamin D Deficiancy, at this time my doctor sent me to get an ultrasound of my thyroid and tested me for Thyroid Antibodies.
Thyroid Peroxidase (TPO) Ab – 482 HIGH
Thyroglobulin Antibody - <1.0
After reviewing the ultrasound, and getting a positive result for thyroid antibodies I was diagnosed with Hashimotos Thyroiditis. An autoimmune disease that attacks your healthy thyroid. I was started on levothyroxine and my doctor and I began working on finding the right dosage to help me.
8/31/2016 – tested TSH+Free T4
TSH – 0.497
T4, Free (Direct) 1.81 HIGH
9/2016 began experiencing terrible knee pain once again. Seemed to happen out of nowhere. I was unable to put much pressure on the knee and began walking with a limp. Doctor was concerned there could be a potential blood clot, scheduled an ultrasound on Lower R Ext Venous and Venous Duplex Low Ext Right and an xray on the knee. Tests came back normal. Referred me to an orthopedist.
Went to orthopedist, was scheduled for an MRI of the Knee, results came back with a torn meniscus and surgery was suggested. Did not obtain the surgery due to the high deductible on my insurance.
3/17/2017 – Still not feeling well, all the same symptoms. Doctor gives me another battery of blood tests. Results below
ANA IFA Screen w/ REFL to titer and pattern, IFA – Negative
CBC (H/H, RBC, INDICES, WBC, PLT) – All within range
Rheumatoid Arthritis, Diagnostic Panel, Comprehensive - all within range
SED Rate by modified Westerngren – 33 – HIGH
Doctor decides my elevated SED rate is fine and nothing further is done. I don’t accept opioids at this point so I take ibuprofen for the pain when it gets too bad to deal with. Sent me to an endocrinologist who looked at my blood work, told me everything was fine and there was nothing more she could do, Through the course of the year I continue to feel exhausted with bouts of insomnia and hypersomnia, If I am on my feet for an extended amount of time my legs hurt so bad it’s almost impossible to walk. I have now been walking with a limp for over a year. If I am stationary for too long my body is so stiff I can’t start walking right away. Sleep is difficult due to restless legs and pain. I have pain that shoots up and down my legs like electricity, I have found a lump near my spine, doctor felt the lump and decided it was nothing to worry about, nothing further has been checked with this lump. Finally after a year I go back in, letting the doctor know everything, and once again we run more blood
CBC (Includes Diff/PLT) - all within range except
MCHC – 31.9 (LOW)
Comprehensive Metabolic Panel – all within range
Lipid Panel - All within range except:
LDL- Cholesterol – 111 HIGH
Non HDL Cholesterol – 134 (HIGH)
TSH 3rd Generation W/ Reflex to FT4 – 2.08
Doctor told me nothing to worry about with the cholesterol.
A rash formed on my cheeks that looked similar to what a “butterfly rash” would look like, I ended up going to a minute clinic because the doctor wasn’t opened at the time, she told me I had rosacia, when I followed up with my primary care, she immediately sent me to a rheumatologist who told me “I have the most legitimate case of fibromyalgia he has ever seen” and that Lupus is a possibility but wanted Sjogrens tested as well, during this period of time the rash went away, and my right eye began to swell off and on for weeks, we ran more tests.
ANA IFA W/ REFL to TITER / Pattern/ MCT Disease ABS – Negative
Rheumatoid Arthritis Diagnostic Panel – All Within Range
Sjogren’s Antibody - <1.0
Sjogrens antibody ssb - <1.0
SED Rate by Modified Westergren – 19
TSH, 3rd Generation with reflex to FT4 – 2.0
Doctors thought the swelling on my eye was Contact Dermatitis, but eventually requested that I go to an Eye Doctor. Went to Eye Doctor and he wanted to run more tests, when he looked inside my eye he saw something and wanted to check various options, he ran even more blood tests, some a repeat of the ones I had just gotten a week earlier
CBC (INCLUDES DIFF/PLT) QHO
WHITE BLOOD CELL COUNT 7.9 3.8-10.8 Thousand/uL
RED BLOOD CELL COUNT 4.68 3.80-5.10 Million/uL
HEMOGLOBIN 13.5 11.7-15.5 g/dL
HEMATOCRIT 40.9 35.0-45.0 %
MCV 87.4 80.0-100.0 fL
MCH 28.8 27.0-33.0 pg
MCHC 33.0 32.0-36.0 g/dL
RDW 12.7 11.0-15.0 %
PLATELET COUNT 374 140-400 Thousand/uL
MPV 11.1 7.5-12.5 fL
ABSOLUTE NEUTROPHILS 5609 1500-7800 cells/uL
ABSOLUTE LYMPHOCYTES 1635 850-3900 cells/uL
ABSOLUTE MONOCYTES 498 200-950 cells/uL
ABSOLUTE EOSINOPHILS 111 15-500 cells/uL
ABSOLUTE BASOPHILS 47 0-200 cells/uL
NEUTROPHILS 71 %
LYMPHOCYTES 20.7 %
MONOCYTES 6.3 %
EOSINOPHILS 1.4 %
BASOPHILS 0.6 %
RPR (DX) W/REFL TITER AND CONFIRMATORY
NON-REACTIVE NON-REACTIVE QHO
COMPLEMENT COMPONENT C3C 152 83-193 mg/dL QHO
COMPLEMENT COMPONENT C4C 30 15-57 mg/dL QHO
RHEUMATOID FACTOR <14 <14 IU/mL QHO
C-REACTIVE PROTEIN 8.8 H <8.0 mg/L QHO
ANCA VASCULITIDES QHO
MYELOPEROXIDASE ANTIBODY <1.0 0.9 AI
<1.0 No Antibody Detected
> or = 1.0 Antibody Detected
Autoantibodies to myeloperoxidase (MPO) are commonly
associated with the following small-vessel
vasculitides: microscopic polyangiitis,
polyarteritis nodosa, Churg-Strauss syndrome,
necrotizing and crescentic glomerulonephritis and
occasionally granulomatosis with polyangiitis
(GPA, Wegener's). The perinuclear IFA pattern,
(p-ANCA) is based largely on autoantibody to
myeloperoxidase which serves as the primary antigen.
These autoantibodies are present in active disease.
PROTEINASE-3 ANTIBODY <1.0 0.9 AI
<1.0 No Antibody Detected
> or = 1.0 Antibody Detected
Autoantibodies to proteinase-3 (PR-3) are accepted as
characteristic for granulomatosis with polyangiitis
(GPA, Wegener's), and are detectable in 95% of the
histologically proven cases. The cytoplasmic IFA
pattern, (c-ANCA), is based largely on autoantibody to
PR-3 which serves as the primary antigen.
These autoantibodies are present in active disease.
ANGIOTENSIN-1-CONVERTING ENZYME 45 9-67 U/L QHO
QUANTIFERON(R) TB GOLD, (DRAW SITE INCUBATED) QHO
QUANTIFERON(R)-TB GOLD, (INCUBATED) NEGATIVE NEGATIVE
Negative test result. M. tuberculosis complex
NIL 0.11 IU/mL
MITOGEN-NIL 8.64 IU/mL
TB-NIL <0.00 IU/m
After my Eye Doctor received the results he let me know I did have an elevated C-Reactive Protein, did not tell me what that meant, and that I have something called “Scleritis” in my eye. A condition where the body attacks healthy tissue in the sclera (or white part) of the eye. This condition is auto immune. I was treated with steroid eye drops. Eventually the swelling on my eyelid went away and the scleritis also dissipated.
I went back to the doctor November for my PAP test and all was normal.
I just returned back to the doctor because the pain is getting worse, I am now experiencing tingling in my arms and legs, I also have been having random blurred vision that is now coming and going. My pain levels are through the roof and this numbness is getting difficult to deal with. I am extremely stiff, often cant get up from my desk at work and just walk. You can hear my body cracking. My doctor has done another blood workup and suggested me going to the neurologist to check for Multiple Sclerosis. I have an appointment with a neurologist on October 1st.
All bloodwork was completed, the findings were all normal with the exception of the following:
ALT – 31 (HIGH)
SED RATE – 29 (High)
I am at the point where I feel like I will never get better or feel whole again. I just want to be able to go hiking again and live my life without hurting. I can’t do the things I love to do because the pain becomes too much. I am seeing that my SED rate is elevated every time I feel so bad that I have to go in to the doctor. I feel like something has got to be going on here that is more than Fibromyalgia. I never got firm diagnosis of lupus, I don’t know what to do or expect and due to the fact that my insurance deductible is so high, I don’t want to keep seeing specialists. I generally have such a positive attitude, I smile through my pain, I try hard to make people laugh every single day, but some days it’s all to much and I just cry in my husbands arms. I wish I had answers.