Prominent lymph nodes, but only in my abdomen

[MintyGreen]

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?

[MintyGreen]

I'm just hopeful for a diagnois at this point. But I hope I find a treatment that works.

[Ken_PA]

There's a lot of uncertainty in these diagnoses for odd immune conditions. A lot of overlap, too.

I suppose it's mainly a problem if/when it comes to what treatment is proposed.

[MintyGreen]

I mean, to be fair I do have muscle pain. But I think thats probably more due to my job requiring me to be on my feet moving around all the time, for 8 to 9 hour shifts. I'm also pretty sure I have delayed sleep phase disorder, because I've always had a strange sleeping schedule. But with my sleep, and my pain, as well as my age and gender, I can see how one might think I have fibro. But I have no family history of it, and my muscle pain and sleep troubles go back way before my stomach pain. I have some symptoms that arent really mentioned here because ive had them for a long long time. I wouldn't be shocked if I had fibro, but I really don't think that's causing my root issues which are nausea and stomach pain.

[Ken_PA]

Your thinking sounds very reasonable. Plus, you had never even mentioned muscle pain here - which as you know is the very hallmark of fibro.

I suppose the rheumy is going mostly by the failure of NSAIDs to relieve the pain. That fact had stood out to me as possibly a very important clue, but I don't know a list of conditions that cause that.

I would guess that the immunologist won't agree with fibro.

[MintyGreen]

Just saw Rheumo and the doctor diagnoised me with Fibromyalgia. He didn't even check my pressure points and when I told him I didn't really think it was fibromyalgia he just blew me off. His nurse gave me a checklist form for fibromyalgia before he even came into the room so I kind of saw it coming. I mean, I definitely have symptoms of fibromyalgia but I don't think it accounts for my main symptoms which are nausea and severe abdominal pain.  Plus from what I can tell Fibro is supposed to lower your pain tolerance but my pain tolerance is still really high. I don't really know what to make off this but I'm planning to go see immunology anyways. He wouldn't give me a referral so I'm going to see my gp.

[MintyGreen]

With the exception of Prozac (which I'm not really sure I actually reacted to because its been 2 years since I stopped taking it and my symptoms have only been getting worse) I've never reacted to a drug. Just most drugs don't help me. Like Tylenol and Ibuprofen don't really help with my pain. And that includes basic pain, like my headaches, or when I broke my ankle. My doctor gave me some meds specifically for stomach pain and for my reflux and they haven't really helped that much either. But I've never had a reaction to drug.

[Ken_PA]

You should be aware that some people react to the 'excipients" in drugs and supplements. These include the fillers, dyes, binders and also maybe even the capsules. The patients can think they're reacting to the drug but sometimes it's really to the excipients.

[MintyGreen]

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.

[Ken_PA]

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?

[MintyGreen]

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.

[Ken_PA]

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/

[MintyGreen]

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.

[Ken_PA]

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.

[MintyGreen]

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?

[Ken_PA]

'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

=======

Btw, your experience with being told it's all in your head is not that unusual.

[MintyGreen]

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.

[MintyGreen]

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?

[Ken_PA]

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.

[MintyGreen]

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.

[MintyGreen]

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

[Ken_PA]

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.

[MintyGreen]

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!

[Ken_PA]

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.

[MintyGreen]

Sorry about the late reply, but yes, I do flush a lot and my face turns red pretty easily which is really annoying.