Lack of diagnosis has become urgent; calm needed (How?)

Posted by shack76 @shack76, May 30 10:41am

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.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

Hello @shack76, There is no doubt that you've done a lot of thinking and research on your condition. I can't begin to imagine how much effort it takes to keep from being overcome with anxiety. You mentioned that your last swallowing study shows the achalasia is getting worse again. I did find a list of actively recruiting clinical trials — Achalasia Clinical Trials: https://www.centerwatch.com/clinical-trials/listings/condition/248/achalasia/.

Have you considered looking for an actively recruiting Achalasia Clinical Trial?

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I had not, but it's certainly worth looking into. Thanks I'll check out this out.

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@johnbishop

Hello @shack76, There is no doubt that you've done a lot of thinking and research on your condition. I can't begin to imagine how much effort it takes to keep from being overcome with anxiety. You mentioned that your last swallowing study shows the achalasia is getting worse again. I did find a list of actively recruiting clinical trials — Achalasia Clinical Trials: https://www.centerwatch.com/clinical-trials/listings/condition/248/achalasia/.

Have you considered looking for an actively recruiting Achalasia Clinical Trial?

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I find it's especially true become important to educate myself as much as possible about the conditions I have because it's essential in choosing who to go to. This seems to be especially true with autoimmune disease, because not all doctors understand the various complications that can happen with them.
I didn't start earlier enough this time and have made a few chooses that I wish I hadn't. Granted, Covid was complication there was not play book for, and the country was still in the middle of the medical shutdowns when this all started. Add to that the rarity of achalasia this has been a far from ideal situation.
When my mother picked from the airport after arriving home from the east coast the first thing she said was, "Where did you leave this time?" She was referring to my four-leave clover. She's an immigrant from Ireland and doesn't think I'm luckiest person in the world.
I don't know I feel compelled to post my mother's joke, other than to say humor can lower anxiety to some degree.

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i have the same problem although not diagnosed with name of the esophagus just stopping and food, beverages of any kind just wont go down. however no one came up with a solution- even in the hospital. but i was in the hospital gir covid pneumonia last june thru august 1 and by accident discovered that the pill they gave me for that horrible covid cough relaxed the esophagus and food and stuff went down. now i carry that pill everywhere. its called Tessalon Perls. prescription- try before surgery.

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@shack76

I find it's especially true become important to educate myself as much as possible about the conditions I have because it's essential in choosing who to go to. This seems to be especially true with autoimmune disease, because not all doctors understand the various complications that can happen with them.
I didn't start earlier enough this time and have made a few chooses that I wish I hadn't. Granted, Covid was complication there was not play book for, and the country was still in the middle of the medical shutdowns when this all started. Add to that the rarity of achalasia this has been a far from ideal situation.
When my mother picked from the airport after arriving home from the east coast the first thing she said was, "Where did you leave this time?" She was referring to my four-leave clover. She's an immigrant from Ireland and doesn't think I'm luckiest person in the world.
I don't know I feel compelled to post my mother's joke, other than to say humor can lower anxiety to some degree.

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stay upbeat. we are always our own best advocate .
what covid showed most is how limited doctors are in their own work environments and limited to the extent of trying something new beyond of “known”. remember that and it will take the anger away. then your task is to find a place if care where pushing the envelope of what is known is accepted as the norm. with that though we have to realize tgat some treatment and drugs may be out of picket at first. i have found a magical phrase that seems to be helping – “ wow while that sounds interesting i cant afford it- so somehow you are going to have to figure our more cost effective approach”. suddenly i find that tge $1000 a month shot is bow $10 for the sane shot. what this phrase ends up doing is causing the pharmacy and doc to work together the paperwork required to get insurance approval. then you recognize a healthcare team that wants to care for you!

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I have two autoimmune diseases and have failed two attempts to wean off prednisone.
I remembered my Rheumatologist suggesting acupuncture for autoimmune and I am going! Calling today.
There have been good results! Find someone with a lot of experience and good reviews.
When Western fails you go east!

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@cantek

I have two autoimmune diseases and have failed two attempts to wean off prednisone.
I remembered my Rheumatologist suggesting acupuncture for autoimmune and I am going! Calling today.
There have been good results! Find someone with a lot of experience and good reviews.
When Western fails you go east!

Jump to this post

@cantek You mentioned your rheumatologist recommending acupuncture for autoimmune. That sounds so interesting. I think I’ll have to look into this!
Did he say how to find a good practitioner?

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My sister has Shogren's and my daughter was just diagnosed with Lupus, they both had anemia and both are eternally constipated. I have eczema and this is prominent in our family also. This is very interesting, I sure hope you get the help you really need. It has opened my eyes a bit more.

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Has anyone but me noticed that modern medicine is going through a "dumbing down" lately? I have been diagnosed by several genetics labs as having a bunch of very serious genetic issues– diseases, disorders, etc. such as cancers, neuromuscular, etc. But each of the labs has said that, for health reasons, I should have a whole genome processing. They all say that whether or not they offer that service. The point is, I am dying. Yesterday I wanted to go to church, but I did not have the strength to get out the door without crawling. Yet I cannot find a doctor in Oregon to order the whole genome screening, covered by Medicare, which I need. They all give a variety of excuses. "Too busy." "I don't understand how it works." etc. I think they are just too damned lazy. There was one doctor who said he would do it, then he refused to contact the insurance company (UHC) for payment of $3000. But then I got a letter from some idiot telling me that I had been referred to him (naturopath) by the other lab because I might have "a bacteria in my throat." Save me from these. Anyway, I accept the untrained and unskilled lay diagnoses I get from the internet and from the neighbors and from the Widow in Paducah. I read it all and take it seriously. BUT NOT WHEN IT COMES FROM MY PRIMARY CARE PHYSICIAN WITH AN MD OR D.O. !!!!!!! Or when I go to an oncologist or neurologist, I expect to receive and respond to the latest clinical scientific knowledge about my LGMDr23 or my Gelsolin/Marfan-invaded hypercardiomyopathy, or my leukoplakia! But what I get is "Oh, that's just normal for folks who have spent decades running or in hard physical labor or just staying alive for 82 years." Are med schools now turning out such nincompoops? Sheesh! No wonder Putin thinks he can rule the world. A doctor without a high level of curiosity about the human body is no doctor at all. OldKarl

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