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Prominent lymph nodes, but only in my abdomen
Hey, so I'm a 21 year old female. About 2 years ago I started getting abdominal pain. I saw GI and got a colonoscopy and an endoscopy and everything was fine. All my blood work was normal. So my doctor diagnoised me with IBS and gave me a new diet plan, which I followed but it hasn't helped. I started getting really bad nausea and dizziness after a while, so my doctor thought I might have an inner ear infection so she sent me to the ENT and an audiologist bc my ears started ringing and my hearing was getting worse. As it happened, I was diagnoised with CAPD a long time ago, and the audiologist told me that they'd recently discovered that sometimes CAPD can be caused by a lesion on the auditory pathway, so she sent me for a MRI where they discovered a Chiari Malformation. So they sent me to neurosurgery where I was informed I had hydrocephelous which was probably cuasing my headaches and nausea. So they put in a shunt that drains into my abdomen. Shortly after my surgery I started getting chest pain and heart burn and started spitting up bile. My nausea and stomach pain got drastically worse a week ago and my doctor sent me to the ER fearing it was appendicitis. They did a CT scan and my appendix was fine but I was told I had swollen lymph nodes in my abdomen which were probably causing my pain. And then they sent me home. But when I talked to my GP she said that my lymph nodes weren't swollen but were just "prominent." She says she can't figure out what's causing my symptoms or what caused my lymph nodes to swell since I haven't had an infection. She threw out Hodgkin's as a suggestion, but didn't look convinced. I'm not either bc while the nodes in my underarms did swell up about 2 weeks ago, they went down after and I don't have any other palpable nodes. Could I have lymphoma that is only in my abdomen?
Also worth noting is that I have been having worsening fatigue. Ive been extremely fatigued aince my pain started, and recently have started sleeping for up to 12 hours.
COMMUNITY LEADER
"Could I have lymphoma that is only in my abdomen?"
Yes, but it's not that likely. That's especially so because, as you've noted, the underarm nodes went down on their own.
It's also possible to have cancer in nodes as a result of spreading from elsewhere (metastasis). But again that doesn't seem to be your problem - again especially because of the underarm nodes.
You might have some unusual immune system disorder, which fits with a person having various problems that mystify doctors. Or your enlarged nodes might be a reaction to something you ate that you are sensitive to. Or you might be combining the two, and have an unusual immune system disorder that gets flared up from something you eat.
Fatigue from lymphoma is typically later stage, and by then a person would have a diagnosable disease. Fatigue from immune dysfunction is common.
What are the sizes of the biggest nodes?
Yes, but it's not that likely. That's especially so because, as you've noted, the underarm nodes went down on their own.
It's also possible to have cancer in nodes as a result of spreading from elsewhere (metastasis). But again that doesn't seem to be your problem - again especially because of the underarm nodes.
You might have some unusual immune system disorder, which fits with a person having various problems that mystify doctors. Or your enlarged nodes might be a reaction to something you ate that you are sensitive to. Or you might be combining the two, and have an unusual immune system disorder that gets flared up from something you eat.
Fatigue from lymphoma is typically later stage, and by then a person would have a diagnosable disease. Fatigue from immune dysfunction is common.
What are the sizes of the biggest nodes?
1 Comments
Hey, thabks for the reply. Unfortunately I don't know how big the lymph nodes are. I wanted to wait to reply until I got home so I could check my discharge paperwork, but it isn't in there. My doctor did run tests a while ago on my immune system to see if it was allergies, but nothing ever came of it. And I haven't been sick at all these two years. At least, not with a cold or the flu or anything like that.
I highly doubt I have lymphoma since no other nodes seem to be swollen. My doctor just threw it out as something she thought it could be since so far everything has come back negative and I seem to be getting worse. She suggested a biopsy, but I felt lymphoma was too far away from my symptoms as I hadnt even been aware that lymphoma could affect the abdomen.
I highly doubt I have lymphoma since no other nodes seem to be swollen. My doctor just threw it out as something she thought it could be since so far everything has come back negative and I seem to be getting worse. She suggested a biopsy, but I felt lymphoma was too far away from my symptoms as I hadnt even been aware that lymphoma could affect the abdomen.
COMMUNITY LEADER
Well, there is a CT report somewhere, which you are entitled to. However, the language used by your doc seems to say they are not overly large, just large enough to be "seen". If they are not overly large, they are not likely the cause of your pain. Btw, cancerous nodes *usually* are not painful anyway.
A few simple tests cannot rule out unusual immune conditions. As far as I know, skin allergy tests cannot necessarily rule out food allergies either - and a person can still be "sensitive" to some foods even though it is not an official IgE mediated allergy condition.
It doesn't even have to be a specific food, but can be a component of many foods. Like salicylates, or histamine, or oxylates.
"And I haven't been sick at all these two years. At least, not with a cold or the flu or anything like that."
That could possibly even be a sign of an overactive immune system. If true, then lymph nodes can also over react.
It's all very complicated and that's why some people with unusual immune conditions go years without a diagnosis.
What I'd suggest is looking at how all of your problems can have one cause. That's a principle called "Occam's Razor". Unusual immune conditions can cause a mystifying variety of problems.
Do you happen to have very flexible joints or stretchy skin? A family history of strange or severe allergies, or autoimmune conditions?
A few simple tests cannot rule out unusual immune conditions. As far as I know, skin allergy tests cannot necessarily rule out food allergies either - and a person can still be "sensitive" to some foods even though it is not an official IgE mediated allergy condition.
It doesn't even have to be a specific food, but can be a component of many foods. Like salicylates, or histamine, or oxylates.
"And I haven't been sick at all these two years. At least, not with a cold or the flu or anything like that."
That could possibly even be a sign of an overactive immune system. If true, then lymph nodes can also over react.
It's all very complicated and that's why some people with unusual immune conditions go years without a diagnosis.
What I'd suggest is looking at how all of your problems can have one cause. That's a principle called "Occam's Razor". Unusual immune conditions can cause a mystifying variety of problems.
Do you happen to have very flexible joints or stretchy skin? A family history of strange or severe allergies, or autoimmune conditions?
I do have flexible joints but as far as I can tell my skin is not stretchy. As for allergies, my mother and her twin sister and their mother do have a lot of food allergies. Like to peanuts and shrimp. They also have asthma. However all of their allergies are life threatening.
I'll ask my doctor about allergies again, but I did go on a BRA diet for a month or so because my mother thought it was a gluten issue. She thinks she might have a gluten intolerance too, so it is possible. However my doctor said that wasn't the case.
Normally I'd be all for Occam's Razor, but I know that some of my symptoms could be being caused by my hydrocephalus or my Chiari Malformation. Its just complicated sorting out what is what. My doctor thinks it might be multiple issues, but shes given up and is sending me back to GI and to Rheumtology in hopes that they'll find something.
She says that if I can find anything that I think it could be, she'll look into it, so if you have any suggestions if love to hear them.
I'll ask my doctor about allergies again, but I did go on a BRA diet for a month or so because my mother thought it was a gluten issue. She thinks she might have a gluten intolerance too, so it is possible. However my doctor said that wasn't the case.
Normally I'd be all for Occam's Razor, but I know that some of my symptoms could be being caused by my hydrocephalus or my Chiari Malformation. Its just complicated sorting out what is what. My doctor thinks it might be multiple issues, but shes given up and is sending me back to GI and to Rheumtology in hopes that they'll find something.
She says that if I can find anything that I think it could be, she'll look into it, so if you have any suggestions if love to hear them.
COMMUNITY LEADER
Well, Chiari can lead to hydrocephalus, of course. EDS, as a connective tissue disorder, is associated with Chiari. If your dizziness occurs when standing? POTS is strongly associated with EDS. Mast cells are the basis of allergies, while MCAS can cause a huge variety of symptoms that go way beyond plain allergies. MCAS might cause EDS.
This should take a while to properly wade through:
https://eu.startpage.com/do/search?query=chiari+eds+mcas
This should take a while to properly wade through:
https://eu.startpage.com/do/search?query=chiari+eds+mcas
COMMUNITY LEADER
BRAT diet has a lot of sugar, which can be a problem with the gut microbes. That is a separate but related, and also very complex, topic. However, as you have discovered, there is unfortunately no simple answer for you.
Sorry about the late reply, but yes, I do flush a lot and my face turns red pretty easily which is really annoying.
COMMUNITY LEADER
I think this case is solved, Minty. The flushing almost certainly comes from overactive Mast Cells (MCAS), which also can cause a large variety if mystery problems. Everything is coming together.
"She says that if I can find anything that I think it could be, she'll look into it."
That's a great doctor you've got. Most docs probably aren't like that.
"She says that if I can find anything that I think it could be, she'll look into it."
That's a great doctor you've got. Most docs probably aren't like that.
I looked up MCAS and it certainly seems to fit! In going to bring it up to my doctor next time I see her and I'll let you know what happens. Thank you!
COMMUNITY LEADER
You can save time by educating yourself thoroughly, and then you can give your doc a quickstart in learning about this.
Please find on youtube a talk by a very well known MCAS doc named Afrin. It has "101" in the title.
Then we can select some things to print to take to the doc, because she can quickly scan that while you are there with her.
Your first Tx will probably be trying OTC antihistamines. A supplement called quercetin might get rid of most of your flushing.
Please find on youtube a talk by a very well known MCAS doc named Afrin. It has "101" in the title.
Then we can select some things to print to take to the doc, because she can quickly scan that while you are there with her.
Your first Tx will probably be trying OTC antihistamines. A supplement called quercetin might get rid of most of your flushing.
So I saw my doctor. She referred me to immunology and wanted to test my thyroid levels again. She still hasn't gotten back to me, so I'm assuming they're good. She put me on Allegra but so far it hasnt really helped. Its only been a week though so I'm not very concerned. Though my upper abdomen pain keeps getting worse. I actually ended up going to the ER. My amylase levels were high, but my lipase levels were normals so the doctors weren't concerned and just told me to get my levels tested again in a week or two
Also my doctor is aware of MCAS. I went in with resources and all that just in case, but she said, "I'm aware of it, and I'm more than happy to refer you to immunology for it, but I have no idea where I would even start looking for that." She also said that she wanted to check my thyroid bc I've started having more upper respiratory problem and night sweats.
COMMUNITY LEADER
I hope the immunologist is well versed in mast cells. Not all of them are.
An immunologist might very likely first order a "serum tryptase" test to rule out mastocytosis. Maybe you can get your GP to order that so the immunologist has the results in hand when you visit.
Hasn't any doc suggested an H2 histamine blocker for your stomach? There a bunch of those such as Pepcid, all in generics too.
Or, you might first try ***mint*** as an anti-inflammatory for the stomach. Not kidding.
An immunologist might very likely first order a "serum tryptase" test to rule out mastocytosis. Maybe you can get your GP to order that so the immunologist has the results in hand when you visit.
Hasn't any doc suggested an H2 histamine blocker for your stomach? There a bunch of those such as Pepcid, all in generics too.
Or, you might first try ***mint*** as an anti-inflammatory for the stomach. Not kidding.
If mint solves my problems, that would be very ironic. But no, she just gave me Allegra. And I'm actually going to rheumotology first. She put a referral in with them a while ago even though I have no signs of immflamation in my blood work and she is wondering if they might know about it. She says if they dont, to ask them to give me a referral to immunology and if they wont to call her back to get a referral from her. What is a serum trypaste test?
Also I saw the GI doctor who told me that MCAS isn't real and dismissed me as just having anxiety. I guess id be more likely to take him seriously of he didnt open the wrong patient file twice and if he actually read my file. He said he "skimmed" through it but managed to miss my colonoscopy results and just the fact that Id had a colonoscopy at all.
So seeing him was kind of a waste of my time. I kinda figured it would be because I don't think the problem is GI at all, but my doctor wanted their opinion on the swollen lymph nodes. Which he's not really concerned about either.
Also he did tell me that my thyroid tests came back normal. Which is cool but my doctor seemed pretty sure that that was what was causing my hot flashes at night and my throat pain.
Oh well. I'm seeing Rheumo in a few weeks and maybe they'll spot something. I'm kind of worried that they'll dismiss me as hysterical as well.
So seeing him was kind of a waste of my time. I kinda figured it would be because I don't think the problem is GI at all, but my doctor wanted their opinion on the swollen lymph nodes. Which he's not really concerned about either.
Also he did tell me that my thyroid tests came back normal. Which is cool but my doctor seemed pretty sure that that was what was causing my hot flashes at night and my throat pain.
Oh well. I'm seeing Rheumo in a few weeks and maybe they'll spot something. I'm kind of worried that they'll dismiss me as hysterical as well.
COMMUNITY LEADER
'Some MCAS patients manifest elevated "inflammatory markers" (for example, an erythrocyte sedimentation rate (ESR) or a C-reactive protein (CRP)), while other, equally symptomatic/inflamed MCAS patients show completely normal levels of certain inflammatory markers.'
https://www.drtaniadempsey.com/single-post/Ask-The-New-York-City-Mast-Cell-Activation-Syndrome-Expert-Mast-Cell-Activation-Syndrome-Questions-Answered
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Btw, your experience with being told it's all in your head is not that unusual.
https://www.drtaniadempsey.com/single-post/Ask-The-New-York-City-Mast-Cell-Activation-Syndrome-Expert-Mast-Cell-Activation-Syndrome-Questions-Answered
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Btw, your experience with being told it's all in your head is not that unusual.
At least my GP believes me. She's been with me for a few years, before I got sick, so she knows that it takes a lot to make me complain. Unfortunately since she keeps sending me to the ER for my symptoms I have a lot of ER visits which makes me a "red flag" to the ER I guess. I went in with rebound pain from a nerve block (for an ankle repair surgery) and the doctor accused me of lying to try to get opiods. Which I already had at home, they just weren't doing anything for my pain. He sent me to my surgeon and she was so angry that he dismissed me like that she actually stormed down to the ER to yell at him.
Also if they want to rule out systemic mastocytosis would they have to do a bone marrow biopsy or is that optional?
Also if they want to rule out systemic mastocytosis would they have to do a bone marrow biopsy or is that optional?
COMMUNITY LEADER
Yes, you are right about the ER. Besides, an ER is hardly ever a good place to get diagnosed with unusual immune conditions - unless an ER doc just by pure chance has a relative or friend with MCAS, e.g. That's just not their forte there.
A BMB would have to be warranted, since it is invasive. If serum tryptase (which is more or less a marker for how many MCs you have) is not highly elevated, then doing a BMB seems less likely. But docs differ on how easily each one wants to order tests or not. I don't think there is an authoritative document that outlines an official Dx'ing procedure.
I'd call the rheumy's office and ask if they are amenable to looking into MCAS or not. If not, then you can try to see a different one. Btw, it sounds funny, but it would help if you had a flushing attack right there during your visit.
A BMB would have to be warranted, since it is invasive. If serum tryptase (which is more or less a marker for how many MCs you have) is not highly elevated, then doing a BMB seems less likely. But docs differ on how easily each one wants to order tests or not. I don't think there is an authoritative document that outlines an official Dx'ing procedure.
I'd call the rheumy's office and ask if they are amenable to looking into MCAS or not. If not, then you can try to see a different one. Btw, it sounds funny, but it would help if you had a flushing attack right there during your visit.
I don't think in can really call and check because my family is military so I just kind of get stuck with doctors. And even if I could, i had to schedule it like 2 months in advance so I'd rather just go and then if need be get a referral to immunology.
I dont really have flushing attacks, so to speak?? Its more that I constantly have red cheeks. It kind of looks like a butterfly rash, but its not as red. But other than that and some petechiae I dont really have any other skin symptoms. And my cheeks have been like that for as long as I can remember. Though my cheeks get hot which is more new, but its also not really concerning. My petechiae on my arms started a bit aftwr my stomach pain, but my doctor says that its probably just from subconscious scratching.
I did get good news. My blood work came back fine. My doctor thought I might have a thyroid issue so she wanted to check it, but according to her not only are my thyroid levels fine, they're actually pretty much perfect. And she says that the CBC came back clean so she feels we can rule out lymphoma completely now.
Also my amylase levels have gone down. Apparently when I went to the ER they were over 900 and now they're down to 310. Which is "still high, but moving in a good direction." My lipase levels are also still fine so my doctor's not really worried about that either.
I dont really have flushing attacks, so to speak?? Its more that I constantly have red cheeks. It kind of looks like a butterfly rash, but its not as red. But other than that and some petechiae I dont really have any other skin symptoms. And my cheeks have been like that for as long as I can remember. Though my cheeks get hot which is more new, but its also not really concerning. My petechiae on my arms started a bit aftwr my stomach pain, but my doctor says that its probably just from subconscious scratching.
I did get good news. My blood work came back fine. My doctor thought I might have a thyroid issue so she wanted to check it, but according to her not only are my thyroid levels fine, they're actually pretty much perfect. And she says that the CBC came back clean so she feels we can rule out lymphoma completely now.
Also my amylase levels have gone down. Apparently when I went to the ER they were over 900 and now they're down to 310. Which is "still high, but moving in a good direction." My lipase levels are also still fine so my doctor's not really worried about that either.
COMMUNITY LEADER
What you have seems more like rosacea then. You used the term "butterfly rash" which you probably know goes with lupus, but you don't seem to have that.
"unconscious scratching" That doesn't sound right.
"And she says that the CBC came back clean so she feels we can rule out lymphoma completely now." That doesn't make sense. I don't think you have lymphoma, but a person with lymphoma can have a normal CBC for a long time at the beginning.
Just for the heck of it, find some pictures of urticaria pigmentosa and see if that looks like your arm. Here's one for starters: https://hellodoktor.com/health-centre/dermatology-health-center/5-must-know-things-urticaria-pigmentosa/
"unconscious scratching" That doesn't sound right.
"And she says that the CBC came back clean so she feels we can rule out lymphoma completely now." That doesn't make sense. I don't think you have lymphoma, but a person with lymphoma can have a normal CBC for a long time at the beginning.
Just for the heck of it, find some pictures of urticaria pigmentosa and see if that looks like your arm. Here's one for starters: https://hellodoktor.com/health-centre/dermatology-health-center/5-must-know-things-urticaria-pigmentosa/
I think her thought process is that if lymphoma was the cause of my abdominal pain which has been going on and getting worse for about 2 years that it would have gotten into my bone marrow.
As for the petechiae I'm pretty sure they are petechiae. My doctor thinks I've been scratching my arms subconsciously or in my sleep. Which I'm not sold on because they only appeared a few months ago, I've never had them before.
They're pinprick small bright red dots on my arms, my legs, and I have a few on my breasts. Now the thing you mentioned does look like this large splotch I have over my left breast but ive had that for a while, at a minimum two years. My mom says I didn't have it before, but I think its just a birthmark
I do know that a butterfly rash goes with lupus, and I also know I dont have lupus. My doctor tested for it because of my blush but my tests came back clean. I have no signs of immflamation. With nothing else panning out though she decided to send me to rheumotology in case it is somehow immflamation and we've just missed it. That's what my appointment this week is for.
She's also sending me back to Neuro bc I've developed a tic in the cold and my tremor has come back. Which means I gotta go back to my neurologist who kinda sucks, but maybe I can see someone else.
As for the petechiae I'm pretty sure they are petechiae. My doctor thinks I've been scratching my arms subconsciously or in my sleep. Which I'm not sold on because they only appeared a few months ago, I've never had them before.
They're pinprick small bright red dots on my arms, my legs, and I have a few on my breasts. Now the thing you mentioned does look like this large splotch I have over my left breast but ive had that for a while, at a minimum two years. My mom says I didn't have it before, but I think its just a birthmark
I do know that a butterfly rash goes with lupus, and I also know I dont have lupus. My doctor tested for it because of my blush but my tests came back clean. I have no signs of immflamation. With nothing else panning out though she decided to send me to rheumotology in case it is somehow immflamation and we've just missed it. That's what my appointment this week is for.
She's also sending me back to Neuro bc I've developed a tic in the cold and my tremor has come back. Which means I gotta go back to my neurologist who kinda sucks, but maybe I can see someone else.
COMMUNITY LEADER
I'd posted the quote above, that "while other, equally symptomatic/inflamed MCAS patients show completely normal levels of certain inflammatory markers", as a way to show that inflammation is not one thing. It's extremely complicated, and also mostly new. Not one person on earth understands it all.
That's why sometimes it's necessary to make a diagnosis just from going by symptoms and then seeing if certain treatments work. Even if a treatment works, you can't be sure why it works.
Have you tried the mint?
That's why sometimes it's necessary to make a diagnosis just from going by symptoms and then seeing if certain treatments work. Even if a treatment works, you can't be sure why it works.
Have you tried the mint?
I haven't because I haven't been to the store. In so tired lately I'm either at work or in in bed. Which sucks because I want to start getting back to the gym and I also want to start cooking again.
I'm seeing Rheumo in a few weeks so I'll see what they say. My doctor is kind of hesitant to put me on things without being reasonably sure that they'll help because this all started as a bad reaction to Prozac but she gave me some antihistamines when I last saw her. It hasn't really helped so that's pretty disappointing, but not every med works for every person. And not a lot of meds work for me.
I'm seeing Rheumo in a few weeks so I'll see what they say. My doctor is kind of hesitant to put me on things without being reasonably sure that they'll help because this all started as a bad reaction to Prozac but she gave me some antihistamines when I last saw her. It hasn't really helped so that's pretty disappointing, but not every med works for every person. And not a lot of meds work for me.
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