And Another One: Dealing With New A Diagnosis Part 1

ribbon with many colors

Dr. Brent Goodman and I at the Dysautonomia International Conference this year.

I was officially diagnosed in January 2024 when I went to Mayo Clinic in Scottsdale, AZ. I went to see Dr. Goodman one last time because shortly after my visit he went to another facility out of state and eventually landed back in Scottsdale, AZ. Not sure how long he will be there, but he is so worth it. I have been suffering with a cluster of wild symptoms for decades but my ANA, SSA and anti-SSA tests were always negative. However, the one constant was that my inflammation makers were always off the chart e.g. CRP and ESR. Something was driving it and the doctors assumed that it was weight. But even when I lost a lot of weight, the numbers were higher still. It wasn't until Dr. Goodman suggested a lip biopsy on my last visit, that I got my answers. He arranged a visit for a local ENT in Arizona, and she took me the very next day. The test was very simple and I didn't feel a thing. The Doctor located a cluster of salivary glands that looked nice and plump, she numbed the area and used her scalpel to slice them out. In seconds there were about 4 fat glands in a jar made ready to ship off for testing. 24 hours later I had an answer. Positive for Sjogren's with a focus score of 1. There are many medical things that you can look up on your own and see the other tests offered. The result was later confirmed by an Optometrist a Wilmer Eye Institute by testing my eyes.

very unflattering picture of me immediately after the lip biopsy

A bit on Dr. Goodman. What sets him apart from the slew of doctors that I saw, with the exception of maybe two or three, he is that dedicated to finding the why. There is a reason why these symptoms exist. There is a reason why the patient is not responding to the usual treatments and once that is known, then how to treat the symptoms can be found. He is exactly like the real-life Dr. House but instead of being an actor on TV, he is a living and breathing person making a difference in the lives of his patients and his peers. He would not give up until he found out why I had POTS. POTS is a syndrome that has it's origins from a multitude of conditions. Unfortunately, pre-covid, most people would wait years before they were diagnosed because POTS symptoms mimic other well-known conditions. This led to doctors being stumped and saying that they didn't know. I would take that because we can try something else or someone else. Instead, I was told that I have anxiety or labeled depressed and that I needed a psychiatrist. Yep, and best believe that he was fired on the spot in a long message in my patient portal highlighting his unprofessionalism. This is not an isolated incident in the journey of many just trying to get a POTS diagnosis. I mentioned that it took me 7 years to get diagnosed officially. Few suspected it and I was told to eat more salt...yeah that was bad advice. I started eating more salt and my kidneys dropped too much potassium, which lead to several hospital stays and nasty gel paste doses of potassium.

After the lip biopsy I flew back to the east coast the next day. By the time that I sat down in my house, less than 24 hours later, I had a positive result. It may seem cliche, but I felt like my world imploded. I was overjoyed at getting an answer, but I also felt betrayed. This disease has ravaged my body for maybe 20-30 years, and it eventually led to damaged small fiber neuropathy (finally tested positive this year). SFN likely damaged my Autonomic Nervous System and thus created the perfect storm for my POTS to develop. Completely preventable. I can't say every doctor was negligent because that would not be true. A few good ones treated my symptoms and were diligent in searching for other causes but ANS issues are not easy to spot, if you don't know what to look for. I encountered many wonderful Medical Professionals along the way and still do. But the ones that could stand to do better are the ones who used medical bias to disregard me and other like me and it's not right.

I am coming up on year two of this new diagnosis. I was advised by Dr. Goodman to search out the Sjogren's angle because once I treat that, then my POTS should improve. That has been proven to be easier said than done. I linked up with a very good Rheumatologist with Hopkins. I was referred by a fellow sufferer of both conditions. There are two promising meds for Sjogren's on the way but that could be another year or two down the road. I am currently taking Plaquenil, which is an immune modulator and helps with inflammation. But so far, it's just meh. I had to stop LDN because it started to increase my blood pressure exponentially. I also trialed Mestinon, more for POTS, but it's helped with digestion for my intermittent Gastroparesis but nothing else. I hope to try IVIG Therapy, but I have to try and fail these meds and so far, I am in remedial Autoimmune class. So maybe we can try that arduous fight with insurance in the new year. I sat in during a talk of Dr. Peter Novak on IVIG and it was so helpful. I learned that it's not a magic wand and can take at least 2 years before I see results. He also talked about who would be a good candidate and thankfully, I qualify. I think that I would endure it since I have enduring much since 2009. There is also SCIG which is placed just under the skin. People tolerate that better, but you have to fail the intravenous therapy first. A whole lot of failing over here but, if that's what it takes...

One more thing. I was advised to pick up The Sjogren's Book sold by Sjogrens.org. I learned so much about things that happened and those that may come. It was very eye opening, and I truly recommend that book for those diagnosed with this Autoimmune condition.

I tried to add an umlaut to the "O" in Sjogren's but this system was not letting me be great. Sorry. 😒

Until next time 🩵