- CASE FILE
17 years of chronic illness that worsens each year. Treatments don't work or stop working and doctors can't figure out why.
ABOUT THIS CASE FILE
I first became ill in 2002 and didn't know I'd never get better. I had EBV earlier in the year, then towards the end of 2002 developed severe ulcerations in my esophagus, stomach, and duodenum. I was immediately placed on PPI's but didn't see improvement. I kept going to the doctors including my OB/GYN telling them something didn't feel right in my abdomen. I was told for 4.5 months I probably had an ovarian cyst that burst. On 3/20/03 I was admitted for emergency surgery to remove a 6lb. ovarian cyst that torsed and killed my left ovary. The cyst was so large that a liter of fluid had to be drained from it before it could be removed. The follicular cyst and dead ovary were removed through a bilateral incision, and I was kept in the hospital for a week. Since then my health has continued to decline. I have chronic unrelenting nausea every day. My stomach doesn't empty properly causing severe acid reflux, and I don't even know what a normal bowel movement is anymore. In 2006 I spent 10 days at Houston Methodist Hopsital seeing the heads of G.I., Vestibular Disorders, and Obstetrics. After the most tortuous tests I've ever been through, I wasn't given a straight diagnosis by any of them.
I had my gallbladder removed in 2009 after 2 years of chronic RUQ pain that radiated to my back. Having the cholecystectomy didn't get rid of the pain, and my most recent GI doc thinks I have Sphincter of Oddi dysfunction. I then had a partial hysterectomy to remove my uterus and right Fallopian tube due to severe and painful periods that lasted 10-12 days, caused anemia, and were unable to be controlled through birth control because I have MTHFR and Plasminogen Activator Inhibitor I. My father has Factor V Leiden. Prior to surgery my doctor and I agreed to keep my right ovary to decrease my chance of post menopausal breast cancer which I'm genetically predisposed to...pending the ovary didn't look questionable. I also had an appendectomy at the same time by a general surgeon. These surgeries were following 2 days in the ER for 10/10 LRQ pain. I noticed post-operatively I was getting increasingly more lightheaded and dizzy when standing. I browned-out numerous times. My mom caught me a few times and was able to guide me to the floor. I wasn't able to stand for long periods of time without feeling like I was going to pass out. My heart was pounding in my ears, my nausea was getting worse, and the migraines were getting worse. I became completely heat intolerant. I asked both of my surgeons why this was happening, and they chalked it up to post op stress and to give my body time to heal. I couldnt accept that answer..I knew something wasn't normal. I then researched feverishly to try and connect the dots and figure out why I had these new symptoms and what do they stem from. That's when I found a video online about POTS that led to a link about Dysautonomia and Dr. David Cannom. I showed the video to my mom and cried. After so many years of being sick, I found my diagnosis. I had Dysautonomia. POTS was confirmed through a TTT. While being observed in the Tele unit during 2 days of the cardiac work up, I was seen bedside by a neurologist and endocrinologist. My Hashimotos disease was going to be checked again and monitored, and I had a brain MRI & C spine MRI checking for the cause of vertigo, tinnitus, chronic neck pain, weakness in my hands, as well as tingling and numbness. I had a EMG done and didn't get any answers from that or the MRI's. I was sent to Rheumatology for chronic joint pain and hip pain that wakes me up at night. I was given cortisone injections and told to do Tai Chi. Some Lupus markers came back high, but apparently not enough to mean anything. EDS was talked about, but he wouldn't order tests to definitively have an answer. But I was offered a prescription for Plaquenil. By 2017 I was breaking out in welted body hives from touching or brushing up against an object. SOB, tingling lips and face, coughing, and difficulty breathing would always follow close behind. I was referred to an Immunologist by my cardiologist who was managing my POTS with Northera. The Immunologist diagnosed me with MCAS and "pan-allergies." The list of food items I can digest and not have a localized reaction to is very slim, and I can't handle any environmental allergens. I was given an epi-pen and started on Xolair after failing Zantac & Zyrtec, Pepcid & Benadryl, Cromolyn, Ketotifen, and Singulair.
I found a great migraine specialist at Keck USC that administers Botox injections every 3 months. It's cut down my migraines significantly, but I still deal with cervical neuralgia, occipital neuralgia, trigeminal neuralgia, and TMJ.
10/4/18 I had a port placed in my chest because getting IV saline infusions twice a week had caused painful phlebitis and my remaining veins were blowing. I maxed out on Northera and it stopped working. I had a 20+ point drop in bp during orthostatics. 10/21/18 I was taken to the ER for severe LRQ pain and ended up in emergency surgery at midnight for ovarian torsion. My blood pressure did not bounce back, I had a post op staph infection, and I healed very slowly from this surgery. My blood pressure has been worse ever since and the infusions aren't working like they used to. I'm at a loss. Is the root cause of such severe autonomic dysfunction originating in the brain stem? Is it a genetic abnormality I can only find through a specific series of genetic testing? Was it the EBV I had at 19? Is it environmental? I've been sick my entire adult life and don't know what it feels like to inhabit a body that does all the involuntary actions it's supposed to do on its own. Prior to this 17+ year illness, I was diagnosed with severe anxiety,
OCD, and panic attacks. All of which has been pretty well managed with an SSRI until recently. It seems like none of my medications are working. My fatigue is at an all-time high, the brain fog is so bad that I can't ever find my words & end up playing a weird version of charades because I can't remember "ketchup." I'm taking at least 16 mg of Zofran ODT every day which is barely covering the nausea. I can't digest anything. Water even sits in my stomach. My hips hurt so bad they wake me up at night. My neck feels like it can't carry my head, and despite 2 infusions a week, my systolic blood pressure isn't even hitting 100. It feels like my body is failing...but I know there's a root cause. We just haven't found it yet.