Lack of diagnosis has become urgent; calm needed (How?)
This is a general question anybody who has ever faced a difficult diagnosis (autoimmune diseases can all be) and the lack of diagnosis has made an urgent situation. How do we remain calm, but go about finding the correct diagnosis as efficiently as possible?
I don't believe anybody has to have experienced my details to address this.
I will summarize why it has become urgent:
About two years ago while still lived in Vermont I was diagnosed with achalasia (it was my third autoimmune disease–Graves and Celiacs are both well controlled). I was scheduled to see doctors at Mass General, when the shut downs from Covid started and I had to come back to Oregon. I went to the Oregon Clinic. They performed two surgeries, and it didn't go well. It's important to note I seem to have always had some symptoms which do not fit the diagnosis of achalasia entirely, as well as the standard ones.
The doctor I saw at the Oregon Clinic believe I was in end stage achalasia and what is called an Esophagectomy was needed. X-rays showed that not to be true.
(One lesson here is I clearly need to demand doctors listen when I try to tell them I think there is more going on than their initial diagnosis and if they won't listen find somebody who will.)
I left the Oregon Clinic. The results of two surgeries left me feeling like my symptoms had simply been rearranged.
I tried going to Mayo. It wasn't successful. I now believe that the record's they drew electronically and the timeline of the Oregon Clinic records coming in (it looked odd when I reviewed the notes on my portal) confused the doctors I was seeing and they weren't sure what to do. I wish doctors in these situation would ask their patients to clarify any questions they have about records, many don't. I clearly can't worry about that now.
Covid is the great x-factory here. It has caused many disruptions, but also helped gain key information. When I combined what had been ruled at Mayo with what was a horrendous reaction to the Covid booster shot, it pretty much made every worse, it pointed us in the direction to look. The symptoms that can't be associated with achalasia support that. (Muscle weakness, mostly my legs and arms; nerve pain; trouble speaking at times because of pain , I get warn out very quickly….this all got worse after the second surgery and especially the booster) I'd been left with a further autoimmune reaction, or more.
After a couple trips up to OHSU, some further testing in Eugene which has shown I do have a fair amount of abnormal antibodies, and thorough look at my health history and significant family history (my mother has lupus and an aunt died of MS …and more)_ we've learned what is the most likely case; I have a major systematic autoimmune that is undiagnosed (The time frame on when it came about?…did it trigger the achalasia?…You got me? Autoimmune diseases are complex area of medicine) Two possibilities, which have come up are lupus and polymyositis. Studies have shown patients with these diseases are around 40 times more likely to develop achalasia. And none of my symptoms, history, ect. contradicts these two diagnoses.
And now we've full circle. The last swallowing study clearly shows the achalasia is getting worse again. And at rate which alarms me. My nightmare situation is I have to legitimately face an esophagectomy and whatever underlining illness seems to driving (if that's the right word) remains undiagnosed. That clearly needs to be avoided. I have no idea what the prognosis of major surgery with the kind of complication I seem to have. If you're not familiar with an esophagectomy; it's where surgeons literarily take a major part of your esophagus, or all, out and replace it by pulling part of your stomach up. There is no doubt it is major surgery and not to taken lightly
I have another round of antibody testing coming up (the first were significant but didn't quite show what we originally thought.) and a nerve study. At that point my primary care doctor wants to try and get me into see a rheumatologist good at making complex diagnosis. The first one available. Many on the West Coast are still backed up because of Covid. My doctor graduated from the University of Washington and will try them.
This situation is ridiculously complex; I'm capable of becoming completely overcome with anxiety at any moment, but somehow need to avoid that a remain calm. Those feelings will only escalating thing further. That I have no idea how to do.
All I know for sure is I've hung in there with this too long just to give up. I somehow finished an MFA in creative writing I started in Vermont while dealing with all this. I have many reasons not to give up, but the clock is ticking.