Having cold agglutinin disease (CAD), a rare form of autoimmune hemolytic anemia, comes with a lot of symptoms. Everyone who has this disease experiences different levels of symptoms, which hinge on how well their body can compensate for hemolysis.
There is one common symptom that we all seem to experience—dizziness. The problem with any type of symptom in any disease is that we tend to have a hard time articulating what we feel. Some of us might say it’s vertigo, while others will say they feel “off.” That’s the thing about being sick. I can’t feel what someone else feels and vice versa. And this is the divide between patient and doctor.
Doctors can only go by their bag of knowledge, and I can only describe what I, in particular, am feeling. For years, particularly during the changing seasons, I would suffer from allergies. I would go to the doctor looking for relief and they would think that I probably have a sinus infection. I would take a course of antibiotics and most of the symptoms would disappear. This became commonplace.
To be fair, allergies and sinus issues can cause dizziness and headaches, among other things. For the most part, these were my chief complaints. No one was looking for a rare disease because, let’s face it, no one typically does until something crazy happens. When you add in the fact that CAD is not well known, it’s a wonder they figured it out.
Read more about comorbidities in CAD
I was finally diagnosed with CAD and somewhere in between, I was finally sent to an ear, nose, and throat doctor. He sprayed the inside of my nose, inserted a long tube, and said, “you’re good.” There were no signs of sinus issues, and he told me to see a neurologist. The neurologist ran a battery of tests and a long list of blood work, and he too found nothing wrong. I continued to suffer. What I didn’t realize at the time was that the dizziness I was experiencing was probably CAD compounded by seasonal allergies.
I often complain that the change in seasons is one of the hardest times for me. It is difficult to readjust to new temperatures quick enough to know when I am getting cold or sweaty, which in turn makes me cold.
I finally went back to the ear, nose, and throat doctor and the same procedures were done with the same diagnosis and recommendation, but this time, I wasn’t having it. I told the doctor I am not going back to the neurologist because he didn’t find anything. I will not keep going round and round. This particular doctor was very gruff, he spoke very loudly, was obnoxious, and he dismissed my ideas. He was the same the first time I met with him, but I let it go. He set up a follow-up appointment after he read the neurologist’s reports and suggested that we do a nasal scan. He never followed up and I decided I needed to see someone else in the practice. I called and explained the situation and they were happy to comply. This new doctor did in fact order that scan, answered my questions, and found that I have a bone spur in my nasal cavity.
Here is the problem: you can have multiple problems at the same time and this is what blurs the lines between disease and common sicknesses. And that is the case with me. I have CAD and probably have for more years than I realize. I also have allergies. Together, they create issues that confuse things.
Read more about testing for CAD
The doctor prescribed Nasonex and it has been a wonder for me. When my allergies act up, I use it to reduce nasal inflammation. The heavy head, nasal pressure, headaches, and dizziness that are often felt with typical sinus infections finally subsided.
I now have a better gauge of what I am experiencing when I have the above symptoms. I am now better able to differentiate between CAD dizziness and allergy dizziness.
This is incredibly important because dizziness in CAD is a sign that my hemoglobin has dropped, and sometimes it can just be a temporary thing with just a slight drop. Not enough for it to be an emergency, but enough that I know I feel off.
I now feel more confident in being able to identify if I am having CAD issues or it’s something a bit more simple and easily remedied. As I said before, it can be so hard to know the difference between your disease exacerbations and other things.