I am incredibly tired. I drug myself to the dentist half an hour away only to find out I was a day early! It was no one’s fault but my own, however it is still frustrating to have used energy I don’t have on getting there. No way could I do it all over again tomorrow; I rescheduled for next week. So much for 2 weeks without any sort of appointment. Oh well!
The reason I am writing despite my fatigue is because I know many of you lovely people are eager to hear about my latest visit with the immunologist, especially after my last post on how the steroid trial went. The gist of my latest health finding is I have Sjogren’ Syndrome. In some people with Sjogren’s, the body limits itself to attacking the lacrimal and salivary glands, therefore the only issues are dry eye and mouth. In others such as myself, the body is much more ambitious. The white blood cells destroy tissue in other parts of the body as well such as the nervous system, GI system, spleen, liver, pancreas, joints, and more, making it a systemic disease. I had to put a lot of clues together (MRI findings, ophthalmological findings, endoscopy findings, biopsy findings, dental history, diagnosis of POTS, symptoms) to figure out Sjogren’s syndrome because, like 30% of people with Sjogren’s, I do not have positive Sjogren’s antibodies. All of the research and essay writing was worth it. My doctor agreed it fits but is likely secondary to another disease. Sjogrens is attacking my nervous system and, possibly, so is this other disease. What this disease may be (more than likely autoimmune and “Lupus-like”) is a mystery. So, yeah… I still have a mystery disease.
The treatment path is a bit up in the air at the moment, but I should know more after going to my 8th new doctor (not to mention my 4 regular doctors I’ve seen) this year. Given the fact my condition is autoimmune and we are hoping to try unconventional therapy, she thought it would be worthwhile to check in with a rheumatologist since autoimmune disease typically fall under their specialty.
For now, I am going to start taking Plaquenil. Plaquenil is considered a disease-modifying anti-rheumatic drug (DMARD). It is mildly immunosuppresive (good since my immunoglobulins are the low end of normal; we don’t want to suppress them too much) and anti-inflammatory. It may prevent further damage to my body as well as possibly reduce aches, fevers, and fatigue. There are no guarantees and it will take a few months to know if it is helpful for me or if we should try something else. I am waiting until next Wednesday to start the drug. I don’t want to start the new medication before my wedding dress shopping day next Tuesday and possibly have side effects exasperating my condition cause me to cancel.
The unconventional therapy we are hoping to convince my insurance to agree to pay for is called intravenous immunoglobulin or IVIG. IVIG has been found to be helpful for both Sjogren’s and for Dysautonomia in some cases, but according to my information, it costs 10 to 15 thousand dollars per treatment. 🙂 You can see why the insurance is a bit wary of paying for its use off label. The good news is: I am a persistent researcher and I plan to put together a paper for them on all of the case study of patients with Dysautonomia, Sjogrens, or a combination or the two who have regained their quality of life thanks to IVIG. Even if I qualify for IVIG, there is no guarantee and I will still require a drug such as Plaquenil.
I am very grateful for good insurance, my education which taught me how to research, and for having found excellent doctors who are willing to listen, think, and act. It feel as though for quite awhile, I was chasing all of my various symptoms through a maze and now I have finally ran them out of the maze and am backing them into a corner with my guns drawn… and maybe a few grenades at the ready in my belt. They are quivering in their boots at each research article I read, each connection between research and my body I make, and each capable doctor I visit. They know their time is up and they will not be stealing my life away from me much longer!