Little did I know, but approximately ten years ago I started out on an adventure I like to affectionately refer to as My CVID Diagnosis Journey.
My little adventure culminated in a shocking diagnosis of Common Variable Immune Deficiency (CVID). Although I came to understand that I was born with CVID, a Primary Immunodeficiency (PI), it was difficult to understand why I was not diagnosed until age 41.
I share my story now because it has helped me to read the diagnosis journeys of other CVID patients.
My CVID Diagnosis Journey Begins With Chronic Pain
In 2008, I distinctly remember the first few “pangs” of pain in my large thumb joints while teaching yoga and deep in my left hip joint while driving long distances as a sales representative.
Now, I was used to various muscle aches and pains that are common for athletes because of my dancing background.
However, this pain was different.
This pain never went away. It only increased over time and seemed to spread body-wide.
There was increasing pain in my lower back and in October 2010 I was diagnosed with a herniated disc in my L4-L5 region. I would eventually receive a total of five steroid shots in my spine in an attempt to control the pain.
Unfortunately, the pain from my back never fully subsided and only added to the body-wide aches and sharp pains I felt in my joints.
Doctors, Doctors, & More Doctors!
I saw many medical specialists in order to find the source of the pain and was diagnosed (sometimes correctly or incorrectly) with several autoimmune disorders.
Together, my doctors and I tried everything to control the pain including physical therapy, doctor-prescribed muscle-relaxers, opioids, steroids and weekly self-injections of Humira. In addition, I tried alternative therapies including massage, chiropractic care, acupuncture, meditation, rake and numerous supplements.
Due to the pain, my efficiency at work decreased as my ability to complete my duties took longer. It became painful to sit for long periods of time at my computer or while driving, It hurt to load my heavy tubs of samples for sales appointments and to bend/crouch down to size cheerleaders for uniforms during the appointments;
At this time, my Rheumatologist (and my body) suggested applying for a 6-week disability leave with my company for which I was provided in May/June of 2014.
Despite my leave from work, my pain and fatigue were unrelenting. So, I kept readjusting my life to minimize any unnecessary activities; merely maintaining a 40 hour a week work schedule and not much else.
Have You Taken an Antibiotic for a Full Year? I Have!
In January of 2015, I developed a painful and debilitating autoimmune disease called Interstitial Cystitis, an inflammatory condition of the bladder lining. It has all of the symptomatology of a bladder infection, but these exist in the absence of any bacterial infection.
My Interstitial Cystitis also presented with a constant fever, nausea, and malaise which confined me to bed. These symptoms would subside only if I remained on an antibiotic.
At this time, at the advice of a medical specialist in womens urology, I elected to have a permanent InterStim Neural Device permanently implanted in my lower back. The device continuously stimulates the sacral nerve to normalize the neural communication between my bladder and brain.
The InterStim device allowed me to stop taking antibiotics, but I still continued to have pelvic and lower back pain.
Despite my physical situation, I continued my work, resting on nights and weekends. I adjusted to the diminishment of my health and still thought my life successful due to my supportive family, optimistic outlook, persistence to get better and my love of my career.
Major Symptoms & Illness Sets In
Beginning in June 2016, I was unable to heal from what seemed like a minor cold with sore throat. Since then, I had also been chronically sick with viruses that mimicked mononucleosis, the flu and strep throat.
I also felt “foggy” mentally 90% of the time, had trouble “grasping” for words, and couldn’t retain my immediate or short-term memory skills well.
Each day I had a different degree of total-body pain, pelvic pain, sore throat, chronic migraines, fogginess and fatigue. I spent 90% of my time resting in bed. On my worst days, I could not get out of bed at all to shower, dress, or help my children do the same before school.
Although I tried to continue working at a job I loved, I finally gave notice to the company I had been with for almost ten years in August 2017.
My CVID Diagnosis – In the Right Place at the Right Time!
In early October 2017, I took my youngest son Jace in to see his asthma, allergy and immunology doctor, Dr. K. Jace had been a patient of Dr. K ‘s since he was two for asthma.
My husband and I were so thankful to Dr. K for diagnosing Jace with the cause of his asthma, acid reflux! After this diagnosis and treatment, we were finally able to get a decent night’s sleep!
At this appointment, I mentioned something about myself to help Dr. K treat Jace. Jace had yet another virus that traveled to his lungs and was causing lots of coughing, mucus, and vomiting.
I do not even remember what I said, but Dr. K took one look at me and told me he needed to run some blood tests on me right away!
The nurses started scrambling because Dr. K wanted these blood tests ASAP!
Ultimately I came back in for my own appointment so they could document my medical history up to that point. I hate needles so having my blood drawn for this test was a “doozy”. They drew something like ten vials of blood for extensive testing of my immune system. Then, I waited.
Blood Test Results Reveal I Have CVID
When the blood tests came back, I had another appointment with Dr. K to discuss the results. The tests showed very low levels of immunoglobulin G (IgG) and low levels of immunoglobulin A (IgA). Dr. K explained that IgG antibodies make up the majority of the immune system’s ability to fight off viruses and bacterial infections. My body did not have enough!
Dr. K then gave me a common vaccine for meningitis to test if and how many of my titers would rise in response.
Giving a vaccine and testing for titer reaction is the second part of testing for a CVID diagnosis.
On October 31, 2017, I was told by Dr. K that only 5 out of 23 of my titers responded. To put that in perspective, the average person would normally have 17 out of 23 titers respond.
Dr. K then explained that I had a genetic condition called CVID. I would need to start Intravenous plasma transfusions every three weeks for the rest of my life.
I was shell shocked to say the least.
Please Consider Sharing Your CVID Diagnosis Journey
I share my ten year journey to my CVID Diagnosis because the stats indicate that it takes most people 10-15 years to receive a CVID diagnosis. As I mentioned above, It has helped me so much to read the diagnosis journeys of other CVID patients. It reminds me that I am not alone.
Please consider emailing me your CVID Diagnosis Journey at email@example.com. Also, please let me know if I have your permission to post for our CVIDiva Community. Let’s tackle our CVID diagnosis together!
Stay strong my Zebra friends!
ABOUT THE AUTHOR
Though DIVA as she may be, her path to success was not easy and is always evolving. Go here to read about her journey in “Becoming the CVIDiva.” If you want to send Susan Alynne a quick message, then visit her contact page here.