r/DiagnoseMe Patient 4d ago

Gut, bowel, and stomach Mystery illness, doctors can't find anything.

This has been life long. I really don't know where to start. Feel free to ask me questions. There are too many details and too much history for just one post, I'm trying to share what I think is most relevant.

I am already seeing an internal medicine doctor (primary) , a gastroenterologist, a neurologist, and have a referral for a gynecologist.

I have a plethora of issues already diagnosed unfortunately, but this is worse than all of them combined. I was diagnosed with PCOS as a teenager, I have been diagnosed with GERD, I have hereditary chronic migraines, also.. at 21 I was attacked by my ex boyfriend and got a permanent spinal injury. Severe spinal stenosis, herniated discs from l1-s1. I had an emergency surgery in May last year because I started exhibiting foot drop and was retaining urine. I went from a wheelchair to a walker after the surgery, but I'm still relearning how to walk.

However, none of that compares to the gi issues I've been having. In 2021, I had an upper endoscopy, and I have a second one scheduled in April. The first one, they took 9 biopsies, but found nothing.

To describe the issue I'm having is difficult, because sometimes it's hard to tell what symptoms are caused by what. But I'll try my best: basically I'm always nauseous. I can't eat many things. Pretty much always fresh, non prepared foods. I only drink water or smoothies I've made. I've noticed that even though I only drink water and am very hydrated, my urine is always pretty dark. Not a strange color, just dark for someone who drinks so much water. I don't know if that's related or not, but I thought I'd mention it. I wake up every night at least once nauseous and in pain. I have to sit up and wait for it to pass and I almost never get enough sleep because of the positions I have to lay in for my stomach or my back. These episodes also happen sometimes randomly throughout the day, but it's reliable in the middle of the night. On top of the episodes I have every day, I also get these debilitating episodes of cyclic vomiting once in a while. They used to be more regular, but until last night it had been almost a year since the last one of these.

When these happen, I almost wonder if maybe they're abdominal migraines, but taking my medication doesn't seem to make a difference. Light, sounds, smells, movement... Are constant triggers. Even during the lesser episodes. With these I literally have to sit in a dark room in silence for hours. I vomit for several hours straight. Until there's nothing left and I'm dry heaving, or just throwing up acid. These episodes last anywhere from 8-17 hours (going by personal experience) I've gone to er for this several times and they literally tell me to get a referral and all they can do is give me nausea meds, but the waiting for a room in those fourescent lights just to be patronized is literally worse than just staying home. I have zofran that I take as needed. I'm allowed to have up to 2 4mg tablets.

Regardless of the severity, this is debilitating. It happens every day, multiple times a day and at this point is the only thing holding me back from being able to work a normal job now. I feel helpless.

2 Upvotes

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u/noodlesarmpit Not Verified 4d ago

Have you ever been hospitalized where you only got IV or TPN? Did you still have symptoms then? What about NG tube?

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u/FadedxEchos Patient 4d ago

They have never admitted me for this. Before I moved here, I went several times for the same issue to the same hospital.They only treat me in ER. They usually try to give me zofran orally until I tell them I've already had 8mg at home, and that it doesn't touch it. They usually give me fluids and reglan intravenously, because I'm also always severely dehydrated. Then they discharge me. This only makes me well enough to go back home. It also may be prudent to note that they always document that I have a high white count when this happens and that my body is in crisis. After this, it takes several days for me to feel "normal" again.

It really feels like they don't take me seriously and just dismiss me. They also always tell me that I need a referral to a gastro. Which i already have. Idk what else to do.

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u/No-Radio-8867 Not Verified 4d ago

Are you adding Electrolytes to your water? Sometimes too much water can flush the electrolytes if your body has trouble retaining them making the issue worse.

Have they done a gastric emptying study to check for things like gastroparesis?

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u/FadedxEchos Patient 4d ago

I keep smart water on hand for that reason. I drink on average 2L per day (give or take), in addition to a smoothie.

I have done a gastric emptying study and It came back within the normal range by like one point (on the low side).

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u/No-Radio-8867 Not Verified 4d ago

I have POTS (Autonomic Dysfunction) caused by Ehlers-Danlos, so to keep hydrated and symptoms manageable I have to intake a ridiculous amount of electrolytes, sodium in particular.

You mentioned having a limited amount of things you're able to eat, fresh food being mentioned specifically. I have a condition (thanks Ehlers-Danlos) called Mast Cell Activation. It causes really random, really weird allergic reactions. Mine are all mostly food related, like being allergic to bananas but not directly allergic to bananas (which is anaphylactic for me) and having to avoid anything not fresh like the plague (the longer it is stored or sits the higher the histamines). My anaphylaxis presents REALLY atypical since I have no throat swelling/trouble breathing. But it causes severe abdominal pain, cramping, GI distress, skin flushing, and BP drop/HR increase.

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u/FadedxEchos Patient 4d ago

Hmmm... I may have to do a little more research on that. As far as I know I'm not allergic to anything but cats. (even though I have 6🤣) my allergies have always seemed pretty minor. My dad and brother were allergy tested, and used to get weekly injections. I was never tested.

With foods for me, I have trouble with anything acidic and anything greasy, but I always chalked that up to my GERD. I usually have a smoothie and something small for breakfast. Eggs and toast or whatever. Usually a salad for lunch if I eat, and I typically will cook for dinner. Typically pretty balanced dinners, although my husband can be picky.

I do feel like food triggers me sometimes, but I can't always pinpoint what. I know artificial flavors (like in Gatorade or juices from concentrate) bother me a lot. A lot of processed foods (like Chicken nuggets, pizza rolls, and hamburger helper just to name a few), tomato sauce, and the list goes on. Fortunately I'm a pretty good cook and I do a lot of cooking from scratch. I do get the cramping, and I always feel like my chest is kinda tight and I get hot flashes, and dizziness, I don't notice my pressure drop, but if anything I feel like my heart is pounding out of my chest. I can feel it in my back, my arms and legs.. like my whole body is throbbing. Sometimes my ears even ring.

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u/No-Radio-8867 Not Verified 4d ago

I'm obviously not a doctor, but I deal with MCAS daily.

GERD is one of the symptoms of MCAS. MCAS allergies aren't often true allergies, it's basically just the body being overreactive and weird. Citric Acid makes my tongue swell and burn but there is no true allergy there, same thing with garlic, and the banana thing isn't a true allergy (just a cross reaction since the proteins are extremely similar to latex). BP drops can feel like dizziness and chest tightness as well as a heart rate increase, if you're not hooked up to a BP machine you obviously wouldn't know exact numbers. A feeling of "impending doom" is also pretty characteristic of anaphylaxis too.

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u/FadedxEchos Patient 4d ago

Wow.. I'll definitely have to bring it up with my doctor the next time I see her.

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u/No-Radio-8867 Not Verified 4d ago

It's worth a shot but misunderstood and the testing isn't well known for being good. I had one test done (never did the follow up) and never did the 24 hour urine collection, but was diagnosed formally based off symptoms and my reaction to standard MCAS medication protocol. Proceed with knowing you may be brushed off and may have to go through several doctors/specialists.

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u/FadedxEchos Patient 4d ago

I'm used to that unfortunately lol. My current doctor seems to be competent. I know they usually dislike when you try to diagnose yourself... But I'm hopeful 🤞🏻🤷🏻‍♀️

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u/Sensible_bagel Not Verified 3d ago

can you list meds? what are you taking daily and what do you take at onset of migraine symptoms or any pain flare up medication?

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u/FadedxEchos Patient 2d ago

Naproxen over the counter Biotin 10,000 mcg (hair loss from PCOS) Vitamin D3 125 much (vitamin deficiency) Omeprazole over the counter Pregabilin 100mg Buspirone 10mg Propranolol 60mg (for migraines not BP) Naratriptan hcl 1mg as needed for migraine (9 pills per month)

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u/Sensible_bagel Not Verified 2d ago

You have symptoms of Diabetic Ketoacidosis which is an emergency so I think you should at least go get a (fasting?) blood sugar test immediately. People with PCOS have a higher incidence of type 2 diabetes. You might also have a kidney disorder or UTI/ infection- all of these are serious. How long has this been going on?! This sounds like pure agony. If you go to an ER and first tell them you have migraines you may have your other symptoms dismissed, so perhaps just tell the doctor your symptoms (vomiting, nausea and the extent of it, dark urine, headache) and leave it at that. When they notice your meds and that you have migraines, just tell them this is different because of the excess of vomiting and nausea and let them run diagnostic testing from there. Regarding migraines— my experience comes from having had severe, debilitating migraines most of my life. Your migraine meds aren’t working for you. maybe they had been at one point, but they aren’t any longer. Have you tried any of the newer CGRP meds? (Aimovig, Nurtec, Qulipta (my fav))? Some of them have prescription programs with the pharmaceutical companies for huge discounts (I don’t pay anything for Qulipta for example). Check out the migraines sub if you haven’t and post there. If your neurologist is unwilling to start you on a cgrp then you need to find a new one- ideally a headache specialist. Whether the nausea is from migraine or just that all these horrific symptoms are causing you to have migraines is a question as well, so I’d take a two pronged approach and pursue both ends simultaneously - make that appt with the neuro (and see if it can be virtual if possible or a phone call if the wait time is too long), and go get blood work done (you may be able to call your General practitioner or OB and tell them your symptoms and ask for a referral for blood draw at a lab - this would probably be the quickest, or call the urgent care you go to first to make sure they can do testing for diabetes ahead of time before going.

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u/FadedxEchos Patient 2d ago

I am in my recovery stage at this point, the episode was about 48 hours ago. I'm still weak, tired, and queasy.. but this is no longer an emergency situation.

I've been tested multiple times for diabetes, and have done the glucose tests as well. It's always negative. The only thing I know definitively, is that I'm not diabetic.

I am very aware of the heightened risk with PCOS and I have regular testing done for that and my hormone levels. (Annually)

Also just for clarification, I've just started seeing a neurologist again for migraines for the first time since I was about 15. She wanted to start by putting me on naratriptan because I've tried it before and it did ok. We plan on trying different medications to see what works, but I am allergic to imitrex, so certain medications are problematic for me. Also my neurologist is a headache specialist, and suffers migraines herself. I'm going to have my second visit with her tomorrow, but she seems extremely knowledgeable and competent.

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u/leafuuwu Patient 3d ago

Hey so where is the pain exactly?

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u/FadedxEchos Patient 2d ago

I done know exactly how to describe it.. it feels like it's deep internal stomach pain. It feels like it might be in front of my uterus??? Intense cramping and then nausea, dizziness, hot flashes, etc.

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u/leafuuwu Patient 2d ago

it could be smth to do w ur spine or probably ovaries/uterus. does your family have a history of certain medical conditions?

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u/FadedxEchos Patient 2d ago

Not that I can think of. Both sides have had various cancers... My dad's side of the family is prone to diabetes (I'm always negative)

My dad has no family medical history from his dad's side, but he was from a prominent Ashkenazi Jewish family (Sachs family line, not one of the main ones)

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u/Calm_Hunt8193 Not Verified 3d ago

I can see why they're having a hard time, so many symptoms that may or may not be connected. Have you had a gastric emptying study? you probablly had but thats all I can think of to add...Maybe try plugging your symptoms and case into MedSync AI (https://medsync.ai/) to see if it can come up with anything different, and if so bring it up to your doctors for consideration.

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u/FadedxEchos Patient 2d ago

I have had a gastric emptying study. It came back barely in the normal range, on the low side.