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.

4 Comments on “Evasive Autoimmune Disease

  1. Hi Sarah. I’m so sorry to hear you’re still struggling. I follow your posts closely and I’m always sending positive vibes your way. I remember our bus rides home from class, and sooo many nights at Fairfax, and I just can’t possibly imagine what you’re going through because you have always been so vibrant and full of life and energy… I know the limitations you’re experiencing must be so frustrating, along with coping with the illness itself. When I read your other post I thought immediately that you must be about to get IV Ig. Although it’s rare to administer, I happen to have had the opportunity to give this on about 4 occasions at Fauquier, for varying reasons, to patients of varying ages and backgrounds. I have seen it turn around some really dire cases (usually infectious issues) and I hope it provides some relief from your symptoms and helps your physicians pin down a diagnosis. Keep your chin up, it’s the only way to see the light at the end of the tunnel <3

  2. Hi there! I’m new to your blog and I just wanted to say thanks for sharing your journey. It’s a hard one that I can’t imagine going through. You have such a special voice, it’s so good of you to share it. I hope you get some REAL diagnosis/treatment options that help VERY soon!! Best of luck-you’ll be in my thoughts!

  3. Because of your blog and looking into things a bit more I see the classic signs of an autoimmune issue with myself – my body won’t absorb/take on vaccinations or keep them, I keep getting infections and once I complete the antibiotics I get another infection – you give me hope that whatever is going on with me can be determined with a bit of perseverence

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