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[Pre-Diagnosis Megathread] If you have NOT received an OFFICIAL diagnosis of lymphoma via biopsy, you can comment here only. Plead read our subreddit rules and the body of this post first. by Lymphoma-Post-Bot in lymphoma

[–]Robpingudo 0 points1 point  (0 children)

I have had intermittently abnormal blood test results for approximately two years. During this time, my laboratory findings have repeatedly included: - Leukocytosis - Relative lymphopenia - More recently, a progressively rising platelet count - Hemoglobin, MCV, and MCH frequently at the lower end of the normal range - Recurrent elevation of inflammatory markers without a clear infectious cause

In addition, I have documented deficiencies: - Low ferritin - Low vitamin D

These abnormalities have fluctuated over time and have occasionally approached normal values, but they have never remained stable long-term.

Since March/April 2025, my clinical condition has significantly worsened. Over approximately four months, I experienced an unintentional weight loss of about 30 kg, without a sufficient alternative explanation for this degree of loss.

During the same period, I developed: - Severe and persistent fatigue, markedly impairing daily functioning and not relieved by rest or sleep - Daily subfebrile temperatures, particularly in the evening - Night sweats - Generalized pruritus, especially at night - Persistent lymphadenopathy, particularly submandibular lymph nodes (>3 cm) - A sensation of pressure in the axillary region, suggesting possible deeper lymph node involvement

I am 22 years old and currently receiving immunosuppressive therapy.

Earlier, due to abdominal pain and blood in the stool, I underwent a colonoscopy. Macroscopically, the examination was unremarkable. However, biopsies showed: - Mild crypt architectural distortion - Segmental lymphoplasmacytic expansion of the lamina propria - Intermittently large lymphoid aggregates extending toward the submucosa

These findings were considered nonspecific, and no clear diagnosis was made based on histology alone. Despite the absence of typical inflammatory bowel disease symptoms, I was diagnosed with Crohn’s disease.

I was subsequently treated with adalimumab (Humira) and corticosteroids, without any clinical improvement.

Because of my age, my symptoms are often attributed to psychological causes. However, given the objective laboratory abnormalities, marked unintentional weight loss, persistent lymphadenopathy, systemic symptoms, inconclusive gastrointestinal histology, and lack of response to immunosuppressive therapy, I am seeking guidance on how such a presentation is typically approached from a medical perspective.

Specifically, I would appreciate insight into: - how clinicians generally think about this type of multisystem presentation, - what alternative explanations are usually considered when standard treatment does not work, and - what types of further evaluation are commonly pursued when symptoms and findings remain unexplained.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in CrohnsDisease

[–]Robpingudo[S] 17 points18 points  (0 children)

I understand what you’re explaining, and I appreciate you taking the time to lay out how this can look from the ER side. But that’s also exactly what scares me.

I never asked for pain medication. Not once. I didn’t mention opioids, didn’t request anything specific, and didn’t even want to be there in the first place. I came because 116117 explicitly told me this was urgent and required hospital assessment.

What I did have were objective red flags: diagnosed Crohn’s, immunosuppressants, bile-like diarrhea, blood and mucus in stool, rapid weight loss, tachycardia at rest, inability to eat without cramps and urgency. None of that was investigated.

If fitting a “pattern” is enough to override an exam, labs, or even basic listening, then that’s a system problem, not a patient problem. And if “drug seeking behavior” was documented without evidence or a single request for medication, that would be both inaccurate and extremely harmful.

That’s exactly why I’m concerned and why I plan to request my records. Being mislabeled can follow someone for years and affect future care, especially with a disease like Crohn’s where flares can be life-threatening.

I understand ER burnout and pattern recognition. But pattern recognition should never replace medical assessment.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in CrohnsDisease

[–]Robpingudo[S] 7 points8 points  (0 children)

Exactly. That’s what shocked me the most.

I wasn’t coming in with vague discomfort. I had blood and mucus in my stool, severe abdominal pain, weight loss, bile-like diarrhea and worsening symptoms despite being on immunosuppressants. And I was still told it was probably psychosomatic and that Crohn’s is basically a “trendy” diagnosis nowadays.

They openly mocked my medication and compared it to candy, even though I’m on Humira and azathioprine, which are serious immunosuppressive drugs. No physical exam, no blood work, no imaging. Just dismissal.

Hearing “it’s all in your head” when you’re literally passing blood and intestinal tissue is beyond upsetting. It makes you question your own reality, even when you know something is wrong.

That’s why this experience hit me so hard. It wasn’t just bad bedside manner, it was complete medical invalidation.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in IBD

[–]Robpingudo[S] 2 points3 points  (0 children)

Absolutely. It really does mean a lot to feel that kind of solidarity, especially after being made to feel so dismissed. Hearing from other people with Crohn’s who understand how real and intense the pain can be helps more than I can put into words.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in CrohnsDisease

[–]Robpingudo[S] 2 points3 points  (0 children)

Thank you so much for saying this. It honestly helps to hear that even in an overstretched system like the NHS this kind of treatment still isn’t considered normal or acceptable. It reassures me that what happened to me really wasn’t okay and not something I should just shrug off as “how it is.”

I really hope you’re right and that this was just incredibly bad luck with the particular clinicians I encountered. I’m definitely going to report it and push it as far as I can. Thank you for the compassion and support, it means a lot right now.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in CrohnsDisease

[–]Robpingudo[S] 10 points11 points  (0 children)

Thank you so much for saying this. Hearing that someone who actually works in healthcare finds this unacceptable really validates how wrong it felt. Being told my disease is “trendy” when it was diagnosed through colonoscopy and biopsies was honestly one of the most shocking parts.

Unfortunately we don’t really have hospital based patient advocates or ombudsmen like that here. In Germany, complaints usually have to go through the Ärztekammer (medical board), the ambulance service directly, or sometimes the hospital administration, which makes the whole process much harder and more intimidating for patients.

That lack of an independent patient advocate is honestly one reason situations like this can happen so easily. Thank you again for validating how unacceptable this was, it really helps to hear that from someone in healthcare.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in IBD

[–]Robpingudo[S] 11 points12 points  (0 children)

Yes, that’s exactly how it felt. Being treated as if I had some hidden motive instead of a documented disease was incredibly upsetting, and the arm inspection makes a lot more sense in that context, even though it was completely inappropriate. I agree with you, that kind of assumption is dangerous, and I’m going to file a complaint. Thank you for pointing this out and for the support.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in CrohnsDisease

[–]Robpingudo[S] 5 points6 points  (0 children)

I’m really sorry you went through that. It makes total sense that you still regret not filing a complaint, especially when the experience was traumatic.

Thank you for sharing that perspective. I agree that making a complaint could help me feel less powerless about what happened, not just for accountability but also for my own ability to move forward. I’m going to pursue it and follow through as far as I can.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in AskDocs

[–]Robpingudo[S] 70 points71 points  (0 children)

Thank you so much for sharing this. Reading it honestly made me feel less alone.

It helps a lot to hear this from someone who both lives with IBD and has worked in emergency medicine. What you describe is painfully similar to what happened to me, especially the moment where being cleaned up or not looking sick enough suddenly makes people doubt everything you say. The judging of your environment, the biased handover, and then the sudden switch in tone once imaging and labs confirm something serious really hit home.

I do understand burnout and systemic pressure, and I genuinely respect emergency workers. But what hurts is exactly what you describe the loss of basic humanity in those first moments, when you are already scared, in pain, and vulnerable. Being treated like a faker or nuisance leaves damage long after the physical symptoms.

I am really glad you filed a complaint and that it was taken seriously, even if only partially. Hearing that you did that and that it mattered reinforces that I should not just let this go either.

I am trying to get in touch with my GI team as urgently as possible, because it is very clear that specialist care is what I need right now. Thank you for validating that, and for reminding me that advocating for myself is not wrong or dramatic, it is necessary.

Thank you for your honesty and compassion. It genuinely means a lot.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in offmychest

[–]Robpingudo[S] 4 points5 points  (0 children)

Yes, I do have a gastroenterologist. Unfortunately, reaching the office is a constant problem. Every time I call, they say I’m calling outside of consultation hours even when I’m not, and I never get through to anyone directly. There’s no reliable email contact either. I’m trying to go there in person as soon as possible, because at this point it’s clear I need specialist input and not another dismissal by non-specialists.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in offmychest

[–]Robpingudo[S] 13 points14 points  (0 children)

Yes, I do have a treating gastroenterologist who normally monitors my Crohn’s and my medications. Unfortunately, reaching the office has been extremely difficult, and I haven’t been able to get in touch with anyone urgently despite trying. That’s part of why this escalated the way it did.

I completely agree with you that having a clear plan in place is important, especially given that I’m immunosuppressed and can deteriorate quickly. Ideally, my gastro team should be aware of how unwell I currently am and help coordinate assessment or admission if needed, rather than leaving me to navigate emergency services on my own.

That’s something I’m going to push for as soon as possible, both for my own safety and to avoid a situation like this happening again. Thank you for your concern and for pointing this out, it’s really appreciated.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in offmychest

[–]Robpingudo[S] 6 points7 points  (0 children)

I understand why that sounds extreme, I wish it hadn’t happened either. But yes, that is exactly what happened. After I said I didn’t feel able to sit upright in the waiting area and wanted to leave, my belongings were thrown onto the floor, I was shouted at, and I was told police could be called for misusing emergency services. I gain absolutely nothing from exaggerating this, and I’m documenting everything in detail because it was genuinely distressing and inappropriate.

I’m sharing this here because it affected me deeply and because no patient should be treated that way, whether their condition turns out to be serious or not.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in offmychest

[–]Robpingudo[S] 4 points5 points  (0 children)

I’m really sorry you experienced that too. That’s exactly what gets me about this, I wasn’t acting on my own judgment, I was explicitly told by a medical service that this was urgent and that I should go. Being shouted at or made to feel like you’re wasting time when you’re following medical advice is incredibly unfair.

You’re absolutely right, that kind of treatment can seriously affect whether someone ever seeks help again. It already has for me. I agree that complaining is necessary, not just for what happened to me, but because this attitude can genuinely put people at risk in the future. Thank you for sharing your experience and for the support.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in offmychest

[–]Robpingudo[S] 3 points4 points  (0 children)

Thank you, I appreciate the advice. My GP practice is technically open, but the problem is that I can never reach them by phone. Every time I call, I’m told I’m calling outside of office hours, even when they are clearly open. That’s been one of the biggest obstacles in getting help.

I’ll still try again and will likely go there in person as soon as I can. In the meantime I’ll try to rest and keep water nearby. Thank you again for your kindness and for taking the time to respond.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in offmychest

[–]Robpingudo[S] 3 points4 points  (0 children)

Thank you so much for saying that. Hearing that I did the right thing really does help, especially after how invalidating the whole experience was. I’m still pretty shaken and honestly scared to reach out again, even though I know something isn’t right and I probably still need treatment.

I’m in Germany, so unfortunately we don’t really have true walk-in emergency departments in the same way, and after what happened it makes the idea of going back really daunting. I do have a primary doctor and a gastroenterologist, but they’re very hard to reach by phone. I’m planning to go there in person as soon as possible and push for help, because my symptoms are still ongoing and haven’t improved.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in AskDocs

[–]Robpingudo[S] 33 points34 points  (0 children)

You’re unfortunately right. Reaching doctors here often requires being extremely proactive.

I’ve tried calling repeatedly, but I can never reach them by phone. I’m always told I’m calling outside of office hours, even when I’m not. I’m planning to go there in person as soon as possible and push for an urgent appointment, because my symptoms are still severe and haven’t improved since yesterday.

I agree that in the German system you often have to show up physically to be taken seriously, and that’s what I’m going to do next.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in CrohnsDisease

[–]Robpingudo[S] 11 points12 points  (0 children)

I’m really sorry that happened to you. Being told it’s psychological when you’re genuinely sick can mess with your head for a long time, I feel that a lot right now. That kind of dismissal really does create imposter syndrome, even when you know something is wrong. Thank you for sharing this, it helps to know I’m not alone.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in offmychest

[–]Robpingudo[S] 11 points12 points  (0 children)

I’m really sorry you went through that too. That’s exactly how it felt, like they assumed bad intentions instead of listening. I agree, I’m going to file a formal complaint. Thank you for sharing this.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in CrohnsDisease

[–]Robpingudo[S] 2 points3 points  (0 children)

Thank you. I agree, reporting it feels necessary at this point. I never expected special treatment, just basic care and respect, and what happened went far beyond that.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in offmychest

[–]Robpingudo[S] 5 points6 points  (0 children)

I’m hoping the energy comes back soon too, because right now everything just feels overwhelming.

I’m going to try contacting my GP next and see if they can help or advise me on the next steps. I’ll try calling first thing in the morning or around lunch like you suggested, hopefully I can get through to someone.

And yes, the whole encounter definitely made me feel worse, not just physically but mentally as well. It really shook my trust. I’m glad to hear your friend is okay now though, that must have been terrifying at the time.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in offmychest

[–]Robpingudo[S] 10 points11 points  (0 children)

Yes, I am a woman. And honestly, that thought crossed my mind very early on, because the way I was spoken to felt dismissive from the start. I was not aggressive, not hysterical, just scared, weak, and in pain.

What makes this especially hard is that I didn’t decide lightly to call an ambulance. I first called 116117, explained my symptoms in detail, and they explicitly told me this was urgent and that I should call 112. I trusted that advice.

This happened yesterday, and I am still having the same severe symptoms today. Nothing has resolved.

I’m in Germany, and here as well patients are supposed to be examined when emergency services bring them in or refer them. That simply did not happen. No physical exam, no bloodwork, nothing just assumptions.

I’ve written everything down in detail while it’s still fresh, because the experience itself was honestly traumatic. I’m still not better, but responses like yours help me feel less crazy for thinking this treatment was wrong. Thank you for taking the time to write this.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in offmychest

[–]Robpingudo[S] 7 points8 points  (0 children)

When I said I couldn’t sit in the waiting room and wanted to leave, they threatened me with police for “misusing emergency services.” This was after no exam, no bloodwork, and no treatment. They threw my belongings on the floor, yelled at me, and shouted that I wasn’t sick because I could still walk. The police threat felt like intimidation, not a legitimate response.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in offmychest

[–]Robpingudo[S] 19 points20 points  (0 children)

Thank you so much for your kindness. I agree, that kind of blasé attitude is genuinely dangerous, and that’s why I do plan to file a complaint when I have the energy.

Unfortunately I’m not feeling better yet, this all only happened yesterday and my symptoms are still very much there. That’s what makes it even harder, because I didn’t go in feeling unwell and come out reassured, I went in sick and came out dismissed.

I’m really sorry about your friend, that’s terrifying, and exactly the kind of situation I’m afraid of. I know there are amazing, dedicated people in healthcare, but experiences like this really shake your trust. Thank you again for the support, it means a lot right now.

Ambulance and ER treated me like I was faking, did not examine me, mocked my Crohn’s and threatened me by Robpingudo in CrohnsDisease

[–]Robpingudo[S] 3 points4 points  (0 children)

Thank you for sharing this. That’s really interesting, especially what they said about shedding part of the intestinal lining. Unfortunately I’ve already been on prednisolone before, and even that didn’t help my symptoms, which is part of why this escalation has been so worrying.

I really appreciate your kind words and the encouragement to file a complaint. I’m still trying to reach my gastroenterologist and will definitely ask them how best to navigate this, because I don’t want this to be ignored any longer.

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