Living as a Mystery Part 2:
SWF seeks MD with open mind and medical curiosity
If there was a degree in pursuing your own medical case, Cecilia Baldwin would have a doctorate by now. At 30 years of age — single, no college degree, no work experience, no car or driver’s license, living at home with her mother — she could easily be misconstrued as unambitious. But nothing can be farther from the truth. Her body is a medical mystery. At age 15, just one week after being treated for a stubborn infection, she was in the Intensive Care Unit with ten percent lung capacity, no peripheral nerve activity and multiple-organ failure. Now she is searching for someone with answers. Below are the details of Baldwin’s medical journey. We ask that you share her story in hopes someone else will recognize these symptoms.
July 2002 Symptoms:
- Incremental loss of coordination, muscle control, endurance & immune system (over six months)
- Sudden inability to read and say grammatically correct sentences
- Resistance to antibiotics
- Nervous system recovered in a matter of weeks after treatment with IVIG
- Lungs stabilized from 10% to around 50%
- With physical therapy, able to move fingers and toes, process textural sensations, read and say grammatically correct sentences after one year
2005: The year of diagnoses
By year three, it became apparent daily therapies, sweat and determination were not enough to will Baldwin’s body to recovery. The only clue or disease of reference from doctors 2002 was for Guillain-Barré Syndrome (GBS), a virus that has a very fast onset — anywhere from hours to a week — and affects the peripheral nervous system (typically up your legs, then arms, then chest). Baldwin was tested for GBS but, while blood work and MRIs supported it, spinal fluid results refuted it.
- Not GBS. Anomalies found, though no evidence of GBS or any other neurological disease or significant damage found after IVIG treatment
- Diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
- Prescribed steroid-pain management regimen, which resulted in severe allergic reaction to steroids
- Chronic Fatigue Syndrome or Myalgic Encephalomyelitis was ruled out
2008: Open to Interpretation
Blood test results, no matter how standard or straight forward, are open to interpretation. For many months Baldwin had been told she was severely anemic. She was prescribed higher and higher doses of iron supplements, but blood results kept showing increasingly severe anemia. This led doctors to the discovery of Hodgkin lymphoma Stage IV B.E.S. The cancer was not the point of origin for the other symptoms.
2015 & Beyond…
By Cecilia Baldwin
In year 13, I went to the Cleveland Clinic, a resort my local team of doctors outside of Washington, DC hoped would bring me the answers I had pestered them for. When we arrived for my appointment on a Wednesday morning during a blizzard, the specialist assigned to the case immediately ordered litany of tests and referred me to see three other specialists that same day. In the end, I was inspected, tested and retested by neurologists, cardiologists, pulmonologist and gastroenterologists. Over three intense, 10-hour days, I was poked, prodded and pulverized. Several secondary diseases were identified including:
-confirmed lung capacity of 50% at best
-confirmed CO2 can go very high upon exertion — over 3 times the normal “high” level
-confirmed autonomic dysfunction
-confirmed POTS (Postural Orthastic Tachycardia)- or POTS like disease
-confirmed slow gut and bladder retention
-confirmed 60% hypovolemia
-confirmed secondary type of Lambert-Eaton myasthenic syndrome — which is considered a confirmed marker for semi-hemiplegic familial migraines
All of the doctors were mystified; there was no detectable “smoking gun.” They could not find or identity a current or past disease of origin. And not one of them agreed with the other about what to do about it. In the end, nothing was done.
The toll on one’s mental health when living with an unexplained medical condition cannot be understated. The only comparable I know is being convicted of a crime one did not commit, and being unable to convince the authorities to either believe you or to look for the real offender. I suppose my situation is far more blessed than of an innocent in prison, and I know that. Not the least of which because I can keep looking and reading medical papers, journals and studies for any relating clue or insights into my condition.
In the ensuing years since the Cleveland Clinic, I have parlayed at a top University Hospital, which verified all the Cleveland Clinic results, as well as consulted with several top specialists.
My second service dog, Camelot, (who is featured in my blogs), actually has the sense that I am about to have seizure-like-episode, or blood clot. He saved my life on three occasions, literally. Service dogs are invaluable when living with a multi-symptom condition.
My oxygen levels immediately after minor exercise (really moving in my world) were tested recently. The results were a clue: My muscles do not absorb oxygen right, convincing my pulmonologist that we have to keep looking in the muscle-disease areas.
Today, my life is spent reading more research papers, finding specialists, refiling my enormous medical file for only “relevant” tests to send the consulting physicians, and arranging more and more specialized tests.
I am beginning to wonder if my great-grandfather, who had an undiagnosed illness with the first major symptom appearing in 1938, also had this unnamed disease? He was seen at Mayo Clinic, NIH and Duke Medical, over several decades, and no one was ever able to figured out what caused his symptoms. As best as can be determined from his surviving siblings and grandchildren, it appears he had long-term muscle weakness and health battles. From family stories, it seems some of our struggles were similar, leading us to wonder if there is a genetic disease component.
With so much detail and information, I have started blogging, finally having the confidence to share my story and connect with so many others living with chronic illnesses and fighting for a diagnosis.
For others living with unnamed illnesses or pain, you have to “know your truth” and be wary of easy answers. My advice is to be very, very honest with yourself, and tolerate as much pain as you can. It’s a very personal decision as to how to handle your pain management, and it’s easy to take a pill and believe the promise it will make you feel better. But I know firsthand that everything has side effects (both short and long term), and it’s important to evaluate for yourself your priorities of quality of life.
Because I have so much support and love around me, I am blessed. However, I long to find others who are living as a mystery.
Do you know someone dealing with the same symptoms as Cecilia? Contact Cecilia. Or learn even more about her mysterious symptoms in part 1.
Gina Dewink is the author of the mysterious thriller, Time in My Pocket — She woke up in 1947…in someone else’s body. Find it on Amazon.