Introduction
According to a google search, "MCTD is thought to occur when the immune system mistakenly attacks the body's own connective tissues, leading to inflammation and damage. It is a rare autoimmune disease characterized by overlapping of other connective tissue diseases such as Lupus, Scleroderma, Polymyositis, and Dermatomyositis." (AI Overview, 2025)
I believe my experience could be beneficial to someone experiencing symptoms that doctors and hospitals have struggled to diagnose. Being labeled a "medical mystery" for nearly a year as my body rapidly turned against me, I wish I had found a resource or search result to guide me.
The First Signs
Reflecting on my past, there were numerous indications of an autoimmune issue from a young age. I frequently fell ill, and when I did, my condition was always more severe than that of others.
A few years back, my teeth started to decay. Despite efforts, my dentist and I couldn't prevent the decay, and in 2022, I had to have all my upper teeth extracted. Metal bars were surgically implanted in my gums, allowing a denture to snap into place instead of my natural teeth.
In 2024, I began experiencing headaches and hearing difficulties. I have had chronic tinnitus for a couple of years now and was initially told I likely had Meniere's Disease. However, after 2 months of investigation, my ENT diagnosed me with mastoiditis. The mastoid bone behind my right ear had died and calcified, causing swelling. This was another instance of bone death.
Between 2022 and 2024, I visited multiple walk-in clinics, the hospital, and my primary care physician, suspecting that I might be entering early menopause. My symptoms included very red cheeks, a hot face, burning ears, a low-grade fever, and feelings of shakiness, weakness, exhaustion, and overall malaise.
In early 2024, I visited the hospital multiple times due to pain. I have endometriosis and was sent home three consecutive times with a diagnosis of a possible ruptured ovarian cyst, as the cause of my pain was unclear. The pain originated in what I believed to be my lower abdomen and radiated down into my thighs and legs. It took months to discover that the pain was actually due to bilateral AVN, or Avascular Necrosis of the hip, which affects both of my hips. Necrosis refers to bone death, a recurring issue in my health struggles. It began with my teeth, then my mastoid bone, and now both of my hips. AVN is uncommon in women of my age and typically occurs at a more advanced age.
Searching for Answers
Discovering that I had bilateral AVN was the final straw. I needed to understand what was gradually destroying the bones in my body and why I constantly felt exhausted and unwell. Initially, I consulted just a primary care doctor and an ENT. After learning about my AVN diagnosis, my primary care doctor included an orthopedic surgeon in my care team. The orthopedic surgeon then referred me to a pain management specialist and an immunologist. My team kept expanding, yet I still had no answers. In October, a cardiologist was added to the team because I experienced a mini-stroke, which led to the discovery of a hole in my heart that allowed a blood clot to pass through. Over the past nine months, I have undergone four surgeries. I had decompression surgeries on both hips, starting with the right and then the left, intended to alleviate the pain in my hips. However, instead of relief, I experienced a rare reaction where the necrosis spread along the drilled tracks, accelerating bone death. In December, I underwent PFO closure surgery to seal the hole in my heart and hopefully prevent further mini-strokes or strokes. In January, I had a mastoidectomy, Tensor Tympani Tenotomy, and biopsy performed behind my right ear. I am still recovering from this surgery as it was just last month, and I have yet to regain hearing in my right ear. Everything on the right side of my head and face feels and sounds as if it's happening in a bubble.
Next month, I will have my right hip replacement surgery followed by my left hip replacement surgery in June. I am only 42 and I have a denture, hearing aid, and I have to use a walker to assist me with walking. I am basically an elder.
The Process:
- After eight months of numerous blood tests and consultations with various doctors, my immunologist ordered an extensive panel of blood tests to examine my body more thoroughly. This included a CBC, SED rate, Thyroglobulin antibodies, C-Reactive protein, Immunoglobulin M, Immunoglobulin G, C3 and C4 complement, ANA cascade, thyroid peroxidase antibodies, Immunoglobulin A, and Immunoglobulin E. It was through this comprehensive blood work and my extensive history of blood test results that my immunologist reached a conclusion about my diagnosis. He identified a pattern in my blood results, noting that my SED rate and C-Reactive protein levels had consistently been high for over seven years. Additionally, my Immunoglobulin M was low, which is significant as Immunoglobulin M serves as the body's first line of defense against infections and viruses.
The Diagnosis
In November, my immunologist called to tell me that he was diagnosing me with Mixed Connective Tissue Disease and that I needed to start seeing a rheumatologist for my future care. I didn't know what a rheumatologist was or why my immunologist couldn't continue treating me. Currently, I am on a six-month waiting list to see a rheumatologist, as they appear to be scarce and highly sought after in Louisiana. In the mean time, my immunologist has put me on a medication called hydroxychloroquine to help manage my symptoms.
- I felt relieved to finally receive a diagnosis, yet I was overwhelmed by the amount of information I needed to grasp and the reality that I won't be able to see the doctor who can truly help me understand it all for at least six months because of the waiting list for a rheumatologist.
-All my knowledge and comprehension of MCTD and my specific experience come from discussions with my immunologist and online research. I've discovered that MCTD may cause avascular necrosis by damaging blood vessels, which can activate endothelial cells, reducing blood flow to bone tissue and eventually leading to bone necrosis. It can also weaken my immune response, allowing infections in my inner ear to spread to the mastoid bone and potentially cause dental problems like tooth decay, gum disease, and mouth sores. I also discovered that a red face, fever, burning ears, and exhaustion are symptoms of what is known as a "flare-up" of MCTD.
If any part of what I've written resonates with you and you're weary of being labeled a "medical mystery," don't simply accept a doctor's disregard for your symptoms. Reject the standard responses. Persist and insist on being listened to. I was told it was merely my endometriosis, just my diabetes, or perhaps a hormone imbalance. It felt as though they were guessing, hoping I would cease questioning.
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If you're not comfortable with your doctor, don't feel obligated to continue seeing them. I'm now with my second orthopedic surgeon because I felt ignored by my first one. My concerns were dismissed, and my pain and symptoms were perceived as exaggerations following my hip decompression surgeries. I sensed something was wrong and experienced increased pain rather than relief. It was another doctor who performed a CT scan of my hips and discovered that necrosis had started spreading through the tracks from my decompression surgeries. I felt guilty for leaving the doctor who initially treated my AVN, but it was the right decision for me.
Learning to Live with MCTD
I am still learning to live with MCTD, but I am eager to manage the usual symptoms and flare-ups and move beyond all the surgeries I've undergone and will need to undergo.
Overcoming Challenges
My main challenge right now is navigating my upcoming surgeries. As a teacher for Students with Exceptionalities (formerly Special Education), managing my responsibilities while using a walker is tough. I need hip replacements and am pressed for time, as my extended sick leave hours are dwindling. My right hip surgery was initially scheduled for earlier this month, but it was postponed due to pre-op blood work results. Being diabetic, my A1C must be below 7.7 to proceed with the surgery. The new date is March 19th, and I have three weeks to lower my A1C from 8.9 to below 7.7. I've made significant dietary changes and started taking Ozempic. My average for the past two weeks has been 126, which corresponds to an estimated A1C of 5.7. I'm hopeful that maintaining such low levels will improve my average blood sugar over the past three months (which the A1C reflects) so that I can have my right hip replaced as planned. My goal is to begin the next school year with two new hips and without a walker.
Due to numerous surgeries and medical issues, I am also dealing with significant lost income. In just the past few months, I have gone from owning a home and living five minutes from my job and my children's school to residing in my little brother's spare bedroom, which is half an hour away from work and the kids' school. One of my sons is now living in my closet, the other is sharing a room with my nephew, and my daughter has had to move in with her father. We have never been separated like this before or had to rely on family for housing. Additionally, I previously had two cars, but I had to let one go due to financial constraints.
The changes in my health and financial situation have led to mental distress, and I've been struggling with some depression along with my anxiety. There are days when I've felt like giving up and letting things take their natural course. If it weren't for the support of my church, friends, family, co-workers, and a therapist who remind me almost daily that they appreciate my presence, I would likely be in a much worse state. Each day, I aim to simply make it through, as the song goes, "One Day at a Time".
Conclusion
In summary, I chose to begin this blog to create a personal outlet as I pursue the path to wellness and wholeness, and to inform others about MCTD, Avascular Necrosis, Diabetes, tinnitus, dental issues, and mastoiditis.
I would also like to provide some encouragement to those who have faced any of the diagnoses I mentioned or are still in the stage of being considered a "medical mystery".
Obtaining a diagnosis justifies going through all the medical tests, doctors, scans, and co-pays.
Final Thoughts
Accompany me as I guide you through the next steps in my journey, hip replacements! Then, eventually, I will consult with a rheumatologist. I will share what I learn here for those who might be struggling to see a rheumatologist or are currently on a waiting list, as I am.
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