12 Years - The Autoimmune War I Refuse To Surrender

 

The Run Around: The Autoummune War I refuse to Surrender

The past 12 years

            The journey I am going to explain was not an easy road. It was rough. Blood sweat and tears rough. In 2008 I knew something was wrong with my body. I volunteered for physical therapy for 2 years in college and knew this was not something a healthy 23 year old should be experiencing. Fast forward to 2020, I wish I would have followed my gut and drove that 2 hour drive to Duke. Through the years, this experience has made me a compassionate human being for anyone experiencing pain. The last 12 years have been stolen from me. I would pray in bed that what I was experiencing was just a simple tumor or cancer that could be removed and I could be cured getting my life back. After 12 years of feeling absolutely miserable, some days better than others, I finally have answers. 

            First of all, my life started a tad rocky as I had Guillain-Barre Syndrome at age 4 and 5.  I was completely paralyzed in a wheelchair. Through physical therapy I was able to recover minus the nerve damage in my feet.  Through the years I did soccer and dance with hardly any issues.  I underwent an ankle surgery in middle school to stabilize my ankle.  That was done at Shriner’s Hospitals for Children.  I am forever grateful to them.  In 2005

I ended up in the ED with a stiff neck, fainting, dizziness and blindness.  I also had tingling in my fingers and gastrointestinal symptoms.  My lungs were burning like fire.  A few weeks later I had a full body EMG. That was awful.  Needles all over my body.  Nothing was concluded from the ED visit.  Perhaps that is where this all began. 

For the past 12 years pain has moved around my body. Migratory. For example, during this week; one day, left achilles, then right shoulder, then right SI joint, the left knee, then neck. Pain changes each day. The pain is so severe and debilitating.  I am lucky to not be in a wheelchair anymore, but don’t want to end up where I began.  It’s depressing when all of your friends are out going for a jog or going on vacations and you’re home just trying to stretch to feel better so you can cook dinner for your family.

It all began on a cool February day in 2008, one month after opening our real estate company. I woke up with a severely swollen left elbow. I assumed it was from working out at the gym as I was trying to get fit for my upcoming wedding. I went to the Rheumatologist I was referred to and had it drained as well as a cortisone injection. A few months later my knee began to swell up very large. I began regularly getting my knees drained at the orthopedic and rheumatology clinic. My Rheumatologist would always say, “You look great, everything seems fine.” I didn’t feel fine. On a side note, I was never tested for Lyme Disease in my initial years of flares which constantly haunted me as doctors said in the latter years it will not show up in blood tests.Neck pain was pretty consistent since college. I blamed that on lots of studying and painting.  I was prescribed Diclofenac for years.

In January 2010 I woke up with a red eye that looked bloody. I went straight to urgent care and they said I had pink eye. I knew deep down it was not pink eye. I then found out at my optometrist that it was corneal erosion. She treated it with an eye patch and Restasis as well as many different dry eye drops. This would happen from time to time due to excess dry eye. I also followed up with an Ophthalmologist.

            That summer I was injured outside carrying a very heavy flower pot.  I laid in the driveway until my husband could come home.  That is when I first began seeing a Chiropractor.  He told me I had mild scoliosis and degenerative disk disease in my lower back.  I also injured my right quadratus lumborum muscle.  I began extensive therapy as well as received many natural sarapin injections in my back.  Going to the chiropractor became a usual for me. Costochondritis just kept continuing to flare up. It felt like fire on my ribs. Such an awful feeling.

In 2012 I noticed my clavicle on the left side was sunk in. It definitely looked and felt weird. Through the years I have asked many doctors about this. It may be causing my thoracic outlet syndrome. I saw a spine surgeon and all he did was a lousy x-ray and no follow-up.

For many years my abdomen has burned like flames at night. The only relief is to sit up in bed and wait for the pain to pass. It has had doctors stumbled for years.  I had two colonoscopies, 3 endoscopies and many barium swallow tests. One doctor even rolled his eyes and told my husband it was all in my head as I was still sedated from a colonoscopy. When I see him in church I literally gag.  What an unkind human being.

I went through two pretty healthy pregnancies.  Almost like a remission from the disease that was taking over my body.  With the first one I had to go to the ED in the middle of the night because I could not go potty. I then had to get a folly bag catheter taped on my leg for a week. Pretty horrific. With my second, I lost my hearing in my left ear the latter two months. I could hardly hear anything at my baby shower. I was so depressed and none of my doctors could figure it out.  Both deliveries were very fast and my babies basically flew out at one and three pushes. For that, I am grateful.  I struggled with my first as the recovery was about a year and a half.  My hips and sacrum were awful.  I also hemorrhaged with both,  more with the first where I had to undergo a D&C while fully alert at the OB Clinic. The doctor was like, “Are you sure you don’t want to be sedated at the hospital?” I agreed to do it in the office because I was nursing my baby and confused how medicines and things would work.  I was also nervous because I had literally just had my first baby and couldn’t leave her side.  I was thankful for the ultrasound tech who gave me some of her Advil before the procedure began.  Staying short of breath and dizzy was my new norm after having my first baby.  Through the years I have had horrific SI joint and sacrum pain with bilateral sciatica.  It has gotten substantially worse after birthing my babies but I wouldn’t trade it for the world.  My girls are everything to me.  Brightness began hurting my eyes.  I had a few of my first migraines. I do not envy those who experience migraines often.  It was awful!

Through the years many doctors would point out my flexibility saying they thought I had Ehlers-Danlos Syndrome and to see a specialist.  While I was pregnant with my second daughter, I was referred to UNC to rule out Ehlers-Danlos incase I needed a cerclage to hold the baby in until the due date. They said Ehlers-Danlos was possible but no real way to know for sure and did zero bloodwork for other diseases. Fast forward to 2019 I was referred to UNC Genetics to make sure no surprise aneurysms etc. would  happen. I was told I needed to bring a family tree history. It took weeks to type.  It was a waste as he would not check my blood because my skin was not stretchy enough. He said I definitely had a connective tissue disease, possibly one with a new name if no one can figure me out.  It was a really disappointing appointment as I really thought I would finally have an answer to all the symptoms.  I drove home in tears because again….there was no answer.

A bad physical therapist is hard to find. I finally went to one for the elbow issue from four years ago. I hadn’t been able to fully bend or straighten my elbow as I lost range of motion. She sat on my arm and yanked it for pretty much an hour. Then she put heat on it. That was basically pure hell and the wrong protocol.

In 2017 my Neurologist thought I may have Pernicious Anemia as I had low B12 and parietal cell antibodies. My gastroenterologist did an endoscopy with stomach mapping and biopsies for possible cancer or PA. I had neither, but I did find out I have regular anemia. I was thankful not to need B12 shots. I just did high dose supplements. Again, I prayed that is why I had all these problems. When nearly everything began to hurt, I was told to get a bone density test. The results were great.  Every time I saw an orthopedic specialist I got so discouraged. “No, we can only treat one joint at each appointment. If you want us to assess another joint it needs to be a new appointment.” I once had an Orthopedist tell me that I probably had MS and she wouldn’t do anymore x-rays on me. It was a horrible day. I left in tears as I just wanted to know what was wrong with my hip. 

In 2013 just after having my first child, I developed Graves Disease. My thyroid was in overdrive postpartum. I would wake up sweating buckets. I was shaky and hot and I lost all my baby weight within a couple weeks of delivering. It is called Postpartum Thyroiditis. It soon switched to Hypothyroidism and I developed Hashimoto’s Disease where I gained weight and was cold with joint pain. My weight would fluctuate from 98 pounds to 112, back and forth. This chaos continued for a few years. I also had a goiter when I had active Graves Disease where I had to have an ultrasound to rule out thyroid cancer.  I got to the point where I couldn’t even push a grocery cart.

In 2014 I was convinced I had either a deadly form of cancer or Lyme Disease. I would spend all night googling everything that was happening to me.  Every day it was something new.  I even had my doctor friends researching.  It was hell on earth. My Neurologist suggested I see an infectious disease doctor to rule out or get treatment for Lyme. I was beginning to dread going out to dinner with friends because every time I would eat a meal my face would pour sweat.  I hated not being able to pick up my babies and carry them around like everyone else.

I decided to try an infectious disease specialist that one of my neurologists recommended to rule out Lyme Disease. I was so worried to go as I was still nursing my daughter as I heard the appointments could take a while. It sure indeed took a while. I was there nearly 7 hours. I waited in the waiting room many long hours. When I first arrived, someone was standing on the table preaching the bible. People kept stumbling in, most could hardly walk. It was sad. The walls were an eclectic red color and my receipt said, “Nail Salon.” I was so confused and scared but desperate for help as I heard this guy can really heal people and was known as,”Doctor House.” As I waited, I noticed blood on the floor and random holes in the walls throughout the clinic. I began to tell myself, “Just go home.” Something told me to wait and see what this guy has to say. He met with me for nearly two hours. He was a great listener. He reminded me of Albert Einstein. He kept coming up with ideas and recommended infusions. I had plenty of bloodwork. Could you imagine how worried I was to get stuck with a needle in that dirty place? Well, I did the bloodwork and the most he could determine was that I had reactive chronic mono also known as an Epstein Barr. He also found a reactive band for Lyme Disease but not enough bands.  Unfortunately, I never went for a follow-up as he retired before I could make it back to see him.

The next procedure was an abdominal ultrasound for all the pain in my abdomen.  My doctor called and said they found a pleural effusion in my right lung. She said the radiologist recommended a CT scan but she suggested it was too risky because I am not a smoker. Fast forward to 2019, I got the CT. It was an inconclusive CT. Fluid in my lung, unsure why. Referred to Pulmonologist for second opinion. 

In 2015 I had to switch endocrinologists. For years I have heard mine was bad but had optimism.  When I asked her to check my Vitamin D because I could barely get out of bed she said, “don’t you think it’s all in your head?” I have never had a doctor say that to my face.  I yelled and stormed out. She came running to apologize. No thanks!  Turns out my Vitamin D was extremely low at 16.  Under 30 is considered low. Under 50 is still not ideal.  The reason I cared so much is because I thought maybe if I tweaked one little thing, I could feel better.  Apparently, that wasn’t the case.  My neck pain began to intensify.

My immune system was on overdrive. Everything was in a flare. My dust mite allergy was sky high off the charts on my allergy test and I was recommended allergy shots. My ENT said the worst dust mite allergy they have ever seen at their clinic. I was coughing a lot at night. Finally decided to have sinus surgery. Also, had some large white cysts removed on my tonsils with a biopsy as well as a tonsillectomy. The recovery was rough but well worth it. I feel better when I take Sudafed but refuse to take it daily.

Random nerve pain began. It was the most frustrating and concerning symptom as I was paralyzed when I was a child. My biggest fear was becoming paralyzed again. The nerve pain and tingling were mostly in my legs. I also had random head tingling that was puzzling.  I began aggressive physical therapy at least once a week. I also began switching vitamins constantly. Trying new herbal supplements and CBD oil. One after another. My shaky hands continued to get worse by the day.  I started a jewelry company in 2008 and decided to pick it back up to distract my attention.

            2017 led me to see a holistic physician at a light therapy clinic.  He said it is all in the diet and thinks it may be the chronic Epstein Barr also known as mono, or Lyme Disease.  He had me work on my diet and take a food sensitivity test.  He said it was the largest food sensitivity reaction he has seen.  I have been working on my gluten intake.  I decided to see another neurologist.  She suspected MS and ordered scans.  Through bloodwork she saw I had B6 toxicity.  Again, I was enthusiastic and thought, “Oh joy, I can fix this and feel better again.” I had a brain, lumbar and cervical MRI to rule out MS. Herniations, annual tears, cervical bone spurs and two benign tumors were found.  All without a cause.  She said eat less dairy because of the inflammation and get a healthy greens drink at the local vitamin store.  She also had me buy a picker-upper tool and told me not to bend over at all anymore.  I now advocate for people with small children and toys all over the house to get one of those handy tools to save their spines.

I began having awful leg spasms and my right ankle joint was locking up daily. It was physically hard getting out of bed. I also had pulsatile tinnitus, which is a heartbeat in my ears.  After years of wondering if a tick bite did all this damage to my body, I got bit by an actual tick landscaping in the yard. It was super tiny and in my groin of all places. I called my doctor and he prescribed doxycycline which would temporarily treat Lyme.  Although I probably didn’t have it I wanted to be on the safe side. We went to Florida that week and I felt awful. Pain all over my body. I read online that doxycycline can cause a herx reaction in your body if you have chronic Lyme. Perhaps that is what I was experiencing. Who knows, it was awful. Sharp pains all over my body. The only time I can possibly recall a bulls-eye looking rash is possibly in high school. I remember having shorts on and standing in my hallway at my house showing my mom my leg. It was a huge red spot about 5 to 6 inches wide with a bite in the middle. Just wish I had a picture of it but smart phones were not around then. The experts say Lyme can trigger autoimmune diseases or chronic arthritis.

One evening I thought I was having a heart attack. Lots of pain, pressure, shortness of breath and more dizziness than usual. I started seeing an awesome Cardiologist. Through many cardiac tests they found a minor prolapsed mitral valve. Later, I ended up having a Tilt Table Test at the hospital for the dizziness. It was ruled that I had borderline POTS which means Postural Orthostatic Hypertension. It usually pairs with autoimmune disease. High salt diet, yearly echocardiograms, Himalayan salt drinks and salt tablets like Nunn energy drinks were prescribed. 

Researching my patient portals basically became my job as I was desperate for answers and doctors rarely would follow-up after x-rays or bloodwork. I knew I was not a hypochondriac.  My rheumatology portal said my sacrum x-ray revealed sclerosis of my SI joint.  This meant I had severe arthritis in my SI joint.

Finally after years of suffering, an orthopedic doctor ordered an MRI of my hip. The MRI was horrible as it was one with contrast where they had to insert a needle into my joint. It was so uncomfortable. They found I had hip dysplasia and a retroverted uterus. Not much I can do for either.  My hip may need a replacement when I am older, but I was relieved to know I did not have a labral tear as that was suspected.  Through the past year I noticed when on birth control my hips would feel better but I stopped as I was worried about side effects and weight gain.  I also tried Zoloft for about 10 months and it helped some with the pain but mostly the stress. I just couldn’t keep taking it because I was sleeping a lot during the day.

In 2018 I went back to the rheumatology clinic and saw the PA. She came into the room, heard part of my story and said, “You have Fibromyalgia.” I got furious and walked out. How could someone perform no testing and assume I had Fibromyalgia. I have already had that ruled out at that same clinic many years before. I also don’t consider it a true diagnosis. I think so many people are incorrectly diagnosed with Fibromyalgia when doctors cannot figure anything else out.  I mean maybe I do have Fibromyalgia on top of everything but it is certainly not my main issue. I was prescribed Cymbalta and thought I was going to die in the night. My heart was racing. One pill and done.

In 2019 my fatigue intensified at the greatest level.  Having to get in bed and lay down every 20 minutes just to catch my breath and get the blood back flowing in my head.  My podiatrist said I now have hammertoes. Looking back, my toes began deforming years ago. They get super painful.  I just dread wearing high heels or being on my feet long periods of time. I also have a lump under the balls of my feet.

My primary care physician referred me to a hematology and oncology specialist. I begged him for all kinds of bloodwork.  I think he thought I was nuts.  He mentioned a bone marrow biopsy but I was thinking no way.  I basically walked out and was crying in the hall.  He came up to me and talked to me and I mentioned that maybe it’s a genetic disease where I can’t absorb vitamins. He then said, “You know what, let’s check your homeocysteine, because checking for the MTHFR gene may not be covered by insurance.”  All he found was that my anemia was getting worse. He seemed to be more concerned than our first encounter.

I began seeing a new gastroenterologist as mine had moved away from the area.  He was pretty amazing.  He gave me an antibiotic called Xifaxin that could reset my digestive tract from the gluten intolerance.  My joints actually felt a tad better taking the antibiotic.  When I am ready he said to come back for a colonoscopy to rule out Crohns.  Doubtful I will ever want another one of those!  We did a fructose and sucrose test.  Of course everything was negative.  I also had to get another abdominal ultrasound because my CT scan said I had a fatty liver.

After many years of dizziness, I was finally referred for a vertigo test at the neurology clinic. Pretty much a complete waste of time. The whole time I felt off but didn’t understand the test. It is basically patient specific. They lean you in different directions and ask if you are dizzy. Basically it was confusing and gave us no concrete answers to my “dizziness.”  One thing after another began. My right middle finger began to have immense pain. It was pain I could deal with. Often small joints are easier for me to deal with; along with the flu etc. I would rather have the flu any day over sciatica or a burning shoulder or neck.

            The hell of a cystoscopy in was horrid.  That was actually one of the worst exams I have been through.  You are fully alert while they shove a thick tube up your urethra into your bladder.  I had to have this done because I have bladder pain a lot and also blood in my urine with every urine test.  They were also investigating why I would have needed a catheter years ago while pregnant.  They found some bladder wall damage.  I also had a renal ultrasound which revealed a complex kidney cyst.  That was worrisome because eighty-five percent can be cancerous.  I have to have follow-up CT scans every 6 months to watch the size of the mass.

In 2020 my left wrist began to swell with severe pain. I tried all the physical therapy.  I went to an orthopedic doctor and he was stumbled and he thinks it may be thoracic outlet syndrome after doing a clinical exam.  He referred me to a thoracic surgeon.  I began having severe tailbone pain where sitting made me want to scream.  Some good news finally happened; my thyroid doctor released me from quarterly check-ups.  My diet may be working.  At least that is one less problem to deal with.  My neck pain began to intensify greatly. I began having stabbing pain in the back of my head that would radiate to my shoulder blade. It was awful. Finally caved for muscle relaxers.

            I was referred to a pulmonologist to investigate the pleural effusion in my right lung.  I went through many tests including pulmonary function for asthma, ultrasound, x-rays, and CT scans.  My pulmonologist said he was puzzled as he has never seen fluid shaped like mine.  My good friend that had lung cancer in the past told me to try to see her doctor.  She helped get me in to see him at Vidant in Greenville.  He was an amazing doctor that had the best bedside manner.  He also appeared rather smart compared to the doctors I have seen in the area; almost like he belonged at Duke.  He tested many things in my bloodwork.  He was leaning toward Lupus, Ankylosing Spondylitis, Rheumatoid Arthritis as those can cause my symptoms and the serositis in my lung.  All my bloodwork came back negative except my C-reactive protein that was supposed to be under 1 came back at 26.  This meant I had high inflammation in the body.  He said his cancer patients in the hospital only get up to around 5.  He said he thought Duke was a better choice than UNC and gave me a referral for a Rheumatologist in Durham at Duke Health.

In the meantime, I had a referral to a new infectious disease doctor. He checked me for everything under the sun.  He is one of the most compassionate human beings on this planet.  He would call from time to time to follow-up with me and see how I am doing.  His first thoughts were Whipple’s Disease, Reactive Arthritis, Crohns, Lupus and Hepatitis.  The bloodwork was very thorough. I was hopeful for an answer.  I had a small intestine biopsy for Whipple’s Disease.  Everything was yet again……negative.  Shocker.

            In August I was sent to Duke Health to see a Rheumatologist.  He spent nearly an hour with me.  He asked tons of questions.  He examined my joints with an ultrasound machine and immediately said, “This is inflammatory arthritis.”  He then began to explain my joints looked like Rheumatoid Arthritis with synovitis present.  My aunt has Rheumatoid Arthritis and hers appears awful.  She is now in her 60’s.  At the appointment I had a swollen left wrist and swollen left knee, among other ailments.  He said it could be the primary disease or I could also have Secondary Sjogren’s Syndrome.  He recommended a lip biopsy to check for Sjogren’s.  I had lots of x-rays and extensive bloodwork.  Matter of fact, my arm stopped pouring blood towards the end of my labs.  We had to wiggle my arm to get the flow again.  He said there is a small suspicion it would be Lupus due to not getting rashes.  I am taking his word on this but he will continue to check Lupus labs at future follow-ups.  I had a flare recently when we bought our beach house and I pray it wasn’t from the sun because that could be a sign of Lupus.  Either way the medications I am on will help both diseases.  He seemed to have empathy for everything I have been through. This will sound wacky to say, but finally in 2020 I could now be believed after 12 years of pretty severe symptoms.  My ANA was positive. That meant there is an active autoimmune disease attacking my body. Doctors would always blame the Guillain-Barre Syndrome I had as a child.  They would say it was the foot drop and my gait (the way I walk) throwing my body off.  I never once questioned that it was all in my head.  Rheumatoid Arthritis could have been what is causing most of my symptoms all along.  I wish I had known sooner as the medicines combat to block inflammation and joint damage.  Rheumatoid Arthritis is diagnosed in 41 out of every 100,000 people each year.  Women are two to three times more likely to develop the arthritis.  If you have a relative with RA you are even more likely to end up with the disease.  Also, if you have prior autoimmune diseases it makes you more susceptible. 

I went for the lip biopsy to check for Sjogren’s Syndrome. I was fully alert while the ENT cut into my lip and removed about five to six salivary glands. It made me super nervous but I was desperate for answers. The biopsy was negative. It said no sign of inflammation but I sure hope they checked for atrophy or whatever is needed when looking for Sjogrens. The pain the first few days was intense and weeks later I still have numbness.  Lovely.

            I went to the neurologist for the EMG on my left arm.  Horrible.  I hate an EMG.  They jab needles in you about an inch deep and move them around.  It was ruled I do not have neurogenic thoracic outlet syndrome, but that I probably have venous or arterial thoracic outlet syndrome.  Possibly a bone or muscle blocking the blood flow.  I heard if I need surgery or treatment that Boston is the best in the US.  I am currently still being worked up for this condition.

            I went for my yearly heart check-up recently and my cardiologist recommended thigh high compression socks and an abdominal binder also known as a corset for cooking dinner and when I am on my feet a lot.  They seem to help some with the POTS.

    Through the years I have found lots of things that benefit; massage therapy, walking when not in a flare, routine bloodwork, exercise, light therapy, chiropractic care, physical therapy and diet. I think it is necessary to follow-up Vit D and B12 level with labs every few months. If you keep a low B12 it can cause nerve damage.  I am thankful to have days where I can go for a walk because many days I cannot.  Also, my neurologist explained to me that the closer to 100 but not over 100 for Vit D is optimal to ward off autoimmune disease. Now when I have a new issue or problem I can just get guidance from my Duke specialist.  I am glad I had the perseverance to stick to my gut and demand answers.   I am ready to help others persue their long coming diagnosis.  I am on Hydroxychloroquine and a chemotherapy injection called Methotrexate.  It can take months for the medication to work but I am hopeful.  I hear once you get one autoimmune disease you can get multiple.  That worries me as I already have quite a few due.  I used to make up excuses when not doing stuff or going out and now I hope my friends can understand. Luckily most all of them have been supportive in this journey.  It has helped immensely to read a book about Heaven.  It is called Imagine Heaven.  I love dreaming of a place better than where I am now. I wrote this in hopes that it can help someone.     

               -Jaclyn C.