this post was submitted on 08 Jan 2024
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Not to bring things down but... when you've been dealing with an undiagnosed illness which has gone on for months (i.e. me), you'll be happy to take someone with the bedside manner of Dr. House as long as you get some sort of answer.
And no, it isn't lupus.
Have you considered it's all in your head? /s
The funny thing is we actually considered some sort of brain issue, but according to my neurologist after seeing my MRI, I have a very healthy brain.
Of course, that doesn't mean I'm not imagining things. Who knows? Anything could be psychosomatic.
Note that neurology is a science at an infant stage. Not only do we have limited tools to analyze the brain, we barely know how it works. In contrast, even though plenty of forms of cancer are very difficult to treat, we have a solid understanding of how it works, we just have difficulties creating remedies that are safe and effective for all forms of cancer.
Things could be psychosomatic, but I was being sarcastic for a reason. Many people dismiss other's pain as psychosomatic as a quick way to ignore their needs. I say trust yourself as much as it makes sense to do so.
Actually, it's not a pain thing. I'm in no pain from it at all. It's just a mystery. I dry heave every morning like I have morning sickness (unlikely due to, like, having a penis) and I have been unable to eat solid food since August (I had another six-week bout in March). I live on Ensure and Gatorade. I have had a ton of tests- X-rays, labs, an MRI, a HIDA scan and two EGDs (where they send a scope down your throat). I have had a biopsy of my stomach. I have had my gallbladder removed. Nothing has changed. So I have an appointment at the Mayo Clinic for the end of March (unless someone cancels and I can get in sooner) where hopefully I'll meet my Doctor House and get this sorted out.
But there's no pain and very little discomfort. I feel fine most of the time. I can live a relatively normal life despite this, although obviously I have fairly low energy. I mean it sucks not eating, I'd love to eat. A new Nepalese restaurant opened here. I've never even had Nepalese food! I drive by it all the time and look at the pictures outside and think, "wow, I wish I could eat that." But I can't. It's not nausea, it's a total aversion to food. The smell, the texture, etc. And no hunger ever. My GP described it as similar to anorexia but with a physical cause. We just don't know what that cause is.
The only positive is that I've lost 70 pounds and am 10 pounds away from my ideal weight. I still look fat, but hey, we can't have everything. So I do recommend having a mystery illness where you can't eat if you want to lose weight. It works better than Ozempic!
I hope you get that all sorted, good luck!
Thanks!
I actually remember reading about a case similar to yours on cracked.com of all places. The guy would vomit out any food he ate and it continued for months.
Apparently, he had a respiratory infection, but instead of lungs it went to his guts and messed his digestive system up. He ended up taking antipsychotics to trick his body into thinking that everything was fine.
Hooray. Unfortunately, that's not me. For one thing, when this started I was on an antipsychotic (not because I'm psychotic, it's for a nerve disorder, but I don't take it anymore) and for another, and this is one of the weird parts, I never have thrown anything up. It's always a dry heave. Even when I was able to eat.
Not to be too gross, but how’s your poo?
Have you had Covid (or Covid symptoms) shortly before this started happening? I think the new booster didn’t come out until September.
It is what you would expect from someone who has a diet low in fiber.
And I had COVID in between the bouts of not eating.
Also, no offense meant here, but I really do not want medical advice over the internet from people I don't know.
Completely understandable. Some doctors are reluctant to consider long COVID, even though food aversion could be caused by it.
Good luck getting to the bottom of it. I’d be freaking out the more mysterious it gets. Especially for a GI issue since they can get a pretty damn good look at the whole thing from several angles.
Re: the fiber…not even liquid Metamucil? I’d be feeling terrible if I was going months without a good poo. That’d probably be more difficult for me than living off ensure (considering I had voluntarily done several week juice-fasts or just soylent+coffee)
Haha, I don't go months. More like two days at most. It's not exactly comfortable, but it's not horribly excruciating either. I am so sensitive to flavors in general that I don't know that I would be willing to try liquid Metamucil. I was told to take Mylanta twice a day for a while and I had to pretty much choke it down. And I got one which was supposed to have a mild vanilla flavor. And it can't be too thick. I even find Ensure Plus hard to take because it's thicker than regular Ensure. My wife got it by mistake once.
There are only a few things I've found I'm able to handle without a problem- Gatorade (purple is the only one I really don't mind drinking though), Ensure, those fruit infused seltzers which aren't sweet, I can occasionally handle a root beer, and once in a while I can get one of those types of smoothies that are just basically blended fruit juice and ice (no yogurt or other thickeners) as long as I let the ice melt in my mouth. That's about it.
All the things you mentioned are acidic.
It sounds like you’ve got the first known case of antacid reflux. I recommend one ghost pepper, rectally, three times a day until symptoms improve. And since I’m not a doctor this doesn’t count as medical advice.
And the emphasis earlier was on “good” poo. I’ve had plenty of mediocre poos…even when eating relatively healthy, they don’t compare to a “I’ve been taking fiber supplements consistently for a few days” poo. Those are bliss.
I'm sorry to hear it.
That's one of the signs of lupus. /s
How do your shoes look? Could be butthole worms
At an opposite corner of the spectrum, you can rarely find doctors as smug as House but as unable to help you as all the others you have previously visited.
It's never lupus
Except that one damn time.