Evasive Autoimmune Disease
I read an article recently that said the average length of time from onset of symptoms to diagnosis of autoimmune disease is 12 to 15 months.
That may not seem like a long time to you, but to me, it is a lifetime. Twelve months of vague, yet debilitating symptoms. 1 year of multiple specialist appointments a week. Countless blood draws, MRIs, EMGs, neurological exams. ER visits. Out of town specialists. 20 different medications. 40 different side effects to those medications.
In 8 days, I will reach that 12 month mark. Lets throw a party.
I do feel like I am close. I have an actual diagnosis of “autoimmune disease”–but they still don’t have the specific one. I want to name it: “Autoimmune disease that affects the autonomic nervous system and causes multifocal radiculopathies.” I guess that may be a bit long winded. Apparently I also have Schmidt’s syndrome- otherwise known as autoimmune polyendocrine syndrome type 2– and Hashimoto’s thyroiditis.
Autoimmune diseases are complex. Patients with these problems face pain, fatigue, changes in regulatory systems, and countless other issues. To doctors, patients who are seemingly healthy looking that complain of these symptoms often get misdiagnosed with things like depression, anxiety, stress, irritable bowel, and overuse injuries. At some point a blood test such as a positive ANA or an IgA deficiency will peak their interest and cause the physician to investigate further–or, in most cases, send the patient to a specialist who will investigate. What has really struck me a CRAZY is how sick I had to get before the physicians really took hold of my case. Now, I have 3 amazing doctors- a neurologist, a cardiologist, and a neuroendocrinologist–who are just around the corner from a larger diagnosis and treatment option. (Hopefully IVIG).
Take heart: As evasive as they may seem, autoimmune diseases can be managed. If you are going through this right now, all I can say is press on. Get to a doctor that will take the time to listen to you and really take in to account what your symptoms are. Don’t give up if the doctor tries to simply manage your symptoms. Do the best you can to eat right, drink fluids, and sleep well. Keep going. We will get there.