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What It Was Like Going to Doctors With Undiagnosed Subacute Combined Degeneration

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“You have a mild mood disorder,” my hematologist/oncologist said.

“You know PTSD could cause physical pain, right?” said the rheumatologist.

“I believe this is an autoimmune issue,” said the gastroenterologist.

“There is no indication that this is autoimmune. It’s time you see an infectious disease doctor,” said a different rheumatologist.

“Blood results are normal. Maybe you should see a sleep specialist,” said the infectious disease doctor.

It felt like I was in a forest or in the middle of the ocean drowning. These are just a few responses I received from different doctors. In between doctor appointments, I was Googling symptoms and attempting to diagnose myself, which is not what anyone should do. It will take your mind to difference places to a point where you become exhausted physically and mentally. The problem with having a rare condition or illness is multi-factored. There isn’t enough research on symptom severity, causes, treatment or prognosis. Additionally, many of the symptoms are similar to more common conditions that are not diagnosed unless blood results or other testing is positive. It is an injustice to those searching for answers. To all of you out there in physical pain with no answers or validation, I hear you… I understand you… I’ve felt your pain… and you are not alone, as hard as that is to comprehend at the moment.

The amount of time I wasted “doctor hopping” makes me absolutely sick to my stomach. To be dismissed and given the run around because doctors couldn’t figure out what was wrong with me is exactly what is wrong with the medical system. While I am sure depression and PTSD played a part in my overall health and well-being, that was not the primary issue. The primary issue is that I have subacute combined degeneration (SCT) and autonomic dysfunction.

SCT is a rare neurological disorder, usually caused by prolonged vitamin b12 deficiency, that affects the brain and the spinal cord. SCT is also considered an acquired myelopathy. Myelopathy is defined as disease of the spinal cord. The other condition, autonomic dysfunction, is considered rare but is probably more common than people realize. The autonomic system is responsible for maintaining the body systems and performs these tasks automatically. In other words, the autonomic nervous system acts without us being consciously aware.

I have been deficient in vitamin b12 since 2013 from the medical records I have. I also have a long history of anemia and migraines. I received vitamin b12 shots for a period of time, but no one told me I needed to have them regularly for the rest of my life. Why hadn’t any of the 50 medical professionals I have seen in the last 2.5 years provided me with this information?

The amount of times I had to describe what I was feeling and how it felt suddenly became an unconscious process. The feeling I experienced when leaving doctor offices suddenly became normal, as if I was becoming content or immune to what these doctors were saying. I left feeling invalidated, lonely, “crazy” and distrustful. While this was all going on, I lost many people in my life as I didn’t have answers for how I was feeling or what was “wrong” with me. Since I didn’t have the answers, many people started thinking I was either lying, faking it or mentally unstable. Not only was I losing my physical capabilities with no acknowledgment or validation, I was forced to accept and cope with physical limitations, changes in daily life and activities, and losing people who were in my life for a long period of time. People can say “they weren’t friends to begin with,” but it doesn’t necessarily make the grieving process any easier.

To those who have or have had similar experiences, please know you are not alone and there are people who understand you. You absolutely cannot give up because there can be an answer one day. Be your number one advocate. You have to live in the body you were given, and therefore, people do not get a say in whether your symptoms are psychological or physical. You have to keep fighting. We do not get a choice in the diagnosis or prognosis, but we do have the choice to fight for our lives, and I encourage you to continue. Although the doctor appointments mentally beat me up, it led me to make the decision to go to Cleveland Clinic where they validated me and provided me with diagnoses as well as treatment options. Had I not gone through the above experiences, I would not have met some of the most amazing, compassionate and understanding doctors who provided me with the validation I wanted and needed. Do not give up.

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Thinkstock photo by Jochen Sand

Originally published: January 6, 2017
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