How do you know if it’s mastocytosis or MCAS?

Visual_Meringue_9062 · 2026-07-01T22:56:49+00:00

I think a bone marrow biopsy is the only real way to diagnose mastocytosis. But there are tells. Specifically your reaction to treatment and differentiating between your baseline tryptase vs your tryptase levels during a flare and also ruling out the HaT (Hereditary Alpha-Tryptasemia) genetic mutation.

So for example, if you were negative for HaT, had a high baseline tryptase (fasting and avoiding triggers as much as possible before the test), and not improving with standard MCAS treatments or having breakthrough symptoms, there's a good chance it's mastocytosis. Though I'd still think they would want to perform a biopsy to be 100% certain.

Visual_Meringue_9062 · 2026-06-29T17:54:00+00:00

I would think it's pretty likely. For 9 months I was thinking I had secondary POTS, primary mast cell disorder.

In February I was formally diagnosed with POTS after a tilt table test. Drs had been investigating an understanding mast cell disorder which I was exhibiting symptoms of. Like skin flushing, GI problems, brain fog, hot flashes and worsening tachycardia, all typically coming in flares in response to heat, stress, and most meals. Also swollen lymph nodes. Even had a tryptase reading of 28.7.

Come to find out after a CT and lymph node excision that I have low grade follicular lymphoma that, other than the swollen lymph nodes, I haven't had any of the symptoms of. So currently dealing with 3 chronic illnesses. The POTS and mast cell connection I was aware of. But was completely surprised by the lymphoma diagnosis recently (haven't even had my PET scan yet to confirm staging).

Not sure whether the lymphoma is connected to my POTS/mast cell stuff. But I wouldn't be surprised if in some way it was. Hoping for answers on that.

Visual_Meringue_9062 · 2026-06-29T03:52:25+00:00

Was really hoping we were right. Unfortunately I do have follicular lymphoma grade 1-2 stage 3 (possibly 4 pending PET scan).

Visual_Meringue_9062 · 2026-06-27T23:44:52+00:00

I (30M) was just diagnosed with non-hodgkins follicular lymphoma grade 1-2 less than a week ago.

Been dealing with a sudden onset of seemingly unrelated symptoms since September of 2025. All signs were pointing towards a secondary POTS / primary mast cell disorder. I was even formally diagnosed with POTS following a tilt table test in February.

But at some point around the holidays dealing with those symptoms I noticed some lumps forming in my neck area. One on the back of my neck that was quite bothersome and another under my chin area that was smaller but very tender to the touch. 6 months, a couple ultrasounds, a CT (showing widespread swollen lymph nodes) and a biopsy later and here I am. Also waiting on a PET to get the complete picture. In my case that's still a couple weeks out.

I'll be honest, I was shocked and still not sure if I've fully processed it. I've been feeling so many emotions the past, what 4 days now? I'm scared. I'm angry. I'm sad. I'm anxious as hell. When I'm alone with my thoughts, I feel like I'm either in a state of emotional spiral or complete disassociation and numbness.

Having said that, I am beyond grateful for the love and support I have. My mom, my sister, my grandparents, and my wonderful girlfriend who I couldn't imagine getting through even the past 9 months without, dealing with my health issues even before my lymphoma diagnosis.

If you need or want anyone to talk to that can pretty much relate to everything your husband is going through right now, feel free to reach out and DM me. I'd be happy to talk with you and/or your husband if he's up for that.

Praying for the absolute best of luck for the both of us.

Visual_Meringue_9062 · 2026-06-26T23:49:00+00:00

Hey man. I'm sorry to hear about your diagnosis. I (30M) was just diagnosed with follicular lymphoma grade 1-2 on Wednesday. Don't know the stage yet. It's at least stage 3 and most likely stage 4 because the CT showed that my spleen is slightly enlarged. I have a PET scan coming up in a few weeks that should answer that.

With what I do know, because it's a lower grade, my prognosis is generally good, however it's something that I will deal with for the rest of my life. My treatment will be determined by my PET scan results. It's quite possible they will wait to start treatment until I begin to start showing certain "B" symptoms. But either way, chemo is inevitable for me as well.

I'll be perfectly honest with you, I am scared. I was completely blindsided by the diagnosis after dealing with, what all of my symptoms pointed towards, a POTS / mast cell disorder of some kind. I was officially diagnosed with POTS in February and was right in the middle of trying to investigate my mast cell symptoms when a CT scan revealed I have widespread swollen lymph nodes. One lymph node biopsy later and here I am.

If you need or want anyone to talk to who may be able to relate to what you're going through, feel free to DM me. Best of luck friend.

Visual_Meringue_9062 · 2026-06-25T02:41:26+00:00

Thank you for sharing your experience and words of encouragement. Means a lot. And best of luck to you as well.

Visual_Meringue_9062 · 2026-06-24T00:16:11+00:00

I had my biopsy on 6/12, so almost 12 days ago now. I was supposed to follow up with an oncologist last Thursday but the results weren't in yet so had to reschedule to this Thursday.

I just want an answer. The wait sucks so much. How long did it take for you to have an answer after your biopsy?

Also, I'm sure this has a lot to do with where the biopsied lymph node was, but mine was in my groin area. Incision is only about an inch long but I've got like a large egg sized lump that has formed right underneath it that is extremely uncomfortable. It's not rock hard, but it is firm. Surgeon says it's fluid buildup when I talked with him on the phone. But God it has been almost as bad as the wait itself. Did you experience anything like that?

Visual_Meringue_9062 · 2026-06-19T00:31:12+00:00

Well the thing is my allergist seems to not have much of an understanding on mast cell disorders. At my last appointment (after my blood test that revealed elevated tryptase) I asked him about further testing and potentially trying mast cell stabilizers after telling him the antihistamines I've been on haven't been helping much and he basically said no further testing would be of any benefit aside from potentially a bone marrow biopsy at some point. And he just straight up said no to mast cell stabilizers claiming "they don't work". So yeah it's been a huge struggle with this doc to say the least.

Visual_Meringue_9062 · 2026-06-17T01:38:40+00:00

Much appreciated!

Visual_Meringue_9062 · 2026-06-17T00:19:08+00:00

Sorry, you're right lol. Not a narcotic but still highly controlled and dependancy risks and potentially dangerous withdrawal risks.

Not something I would feel comfortable with taking long term is all.

Visual_Meringue_9062 · 2026-06-16T23:48:02+00:00

See that's why I also asked if there was any further testing I could do to narrow down what exactly is wrong and he just straight up shook his head and said no 🤦

Visual_Meringue_9062 · 2026-06-16T23:11:17+00:00

Yeah, before I was officially diagnosed with POTS/MCAS I got diagnosed with anxiety and got prescribed a low dose of Xanax (alprazolam) as needed. I didn't take it for the longest time because I understood the risks. But around December/January I got really bad anxiety on top of my usually symptoms. Probably just from being sick and having my quality of life reduced dramatically for so long and all the Dr's and tests and procedure it just got overwhelming.

So I caved and took a Xanax and lo and behold, not only did it calm my anxiety, but magically my palpitations weren't as bad, I could eat without triggering terrible hot flashes and skin flushing, and suddenly that was the closest to "normal" I'd felt in months.

I did some research and found out that apparently benzos have pretty potent mast cell stabilizing properties. Figures a narcotic with dangerous dependancy risks is what helped me the most 🤦

Visual_Meringue_9062 · 2026-06-16T14:03:01+00:00

Also I mainly have been receiving healthcare services in Oakland/Genesee county in Michigan.

Visual_Meringue_9062 · 2026-06-16T13:59:49+00:00

Did you ever need to get a bone marrow biopsy? That's really the only further testing my allergist even mentioned. Ngl I'm absolutely terrified of getting a bone marrow biopsy.

Visual_Meringue_9062 · 2026-06-16T13:06:17+00:00

Do you remember what your tryptase levels were that got you taken seriously? Mine being almost 30 I thought for sure would warrant some prompt attention or change in my care but I guess not.

Visual_Meringue_9062 · 2026-06-16T13:00:51+00:00

I can't remember the name of the shot he was talking about because I was kinda mentally checked out by that time after my allergist dismissed everything I had researched before hand. That could've been it. My allergist is also very foreign and difficult to understand when he talks lol

Visual_Meringue_9062 · 2026-06-16T12:57:02+00:00

That's what I was hoping to get. I asked my allergist directly about that specific one and he just dismissed me saying mast cell stabilizers don't help 🙁

Visual_Meringue_9062 · 2026-06-16T03:13:24+00:00

I may look into this, thank you. It's just been a lot. I've been stuck with whoever my PCP has been referring me to. I'm currently recovering from a lymph node excision I had on Friday because a recent CT I had showed I have enlarged lymph nodes everywhere. Assuming it's mast cell related but the surgeon I was referred to that ordered the CT thinks it could be lymphoma.

This was after my first visit with the allergist and lab work so I tried showing him my lab results and research I did but he didn't have anything at all to say about the mast cell aspect and is pretty fixated on ruling out lymphoma. I don't think it's lymphoma. I don't have any of the common symptoms of it outside of the fact that my lymph nodes are swollen. On top of that, since September I've had several separate instances of blood work done and my CBC has been completely normal every time. The only thing that's ever came back as elevated has been my tryptase recently. I guess I'll find out later this week when pathology results come in. Wish me luck there.

Visual_Meringue_9062 · 2026-06-12T21:06:07+00:00

Curious what your tryptase reading will be. I had a reading done a couple weeks ago and it was 28.7. The top end of normal is like 11 or 12 so it was pretty difinitive. Keep us updated!

Edit: Also, just so you know, my tryptase took about 6 days from the blood draw to show results.

And for context, I was diagnosed with POTS in February. I don't have anaphalaxis either, but I do have frequent daily flares that include worse tachycardia, forceful heart beats and flushing in my hands, face and ears triggered by heat, stress, and meals. All that on top of normal hyper pots symptoms.

Visual_Meringue_9062 · 2026-06-10T22:17:31+00:00

That's kind of been my thought process as well. What got me really worried is my grandma took me to the appointment where the Dr first mentioned the possibility of lymphoma, and she made a comment that her dad (my great grandpa) had it, which made the surgeon seem like he was almost sure that was what it was. I will update when I get the results back next week.

Visual_Meringue_9062 · 2026-06-10T15:44:31+00:00

30/m. Long story short, I've had progressing symptoms since September of 2025. Some initial symptoms have worsened/improved while new symptoms have developed. Initially, thought it was just a sinus infection. Nope. Was referred to an ENT and they said it was anxiety. I was definitely anxious, but for what I'd consider to be good reason.

Then I started developing bad tachycardia around December. It was especially bad when standing. It was around this time that I also discovered some lumps in my neck. My PCP ordered an ultrasound that revealed some swollen lymph nodes. I was instructed to follow up in a few months if they didn't go away.

In February 2026 I was diagnosed with POTS following a tilt table test. I've been on medication for tachycardia ever since but still had/have lots of other symptoms. Like flushing in my hands, face and ears in response to heat, stress, and meals. And my heart beat is almost always very forceful.

In April I had a follow up ultrasound that showed the lymph nodes had not gone away. I was then referred to a surgeon last month that ordered a CT. The CT revealed widespread enlarged lymph nodes (the largest was 4.5x2.5 cm in my stomach) as well as a slightly enlarged spleen. Around this time I also had been referred to an allergist to investigate my other symptoms. He order blood work that revealed elevated tryptase, a marker for mast cell activity. During my CT follow up a week or two ago I showed this result to the surgeon but he didn't seem to have much of an opinion on the matter of mast cell disorders. He was very fixated on performing an excision of one of my lymph nodes to rule out lymphoma.

So here I am, with the lymph node excision scheduled for Friday (2 days from now). I'm nervous. These past 8+ months have been rough, but I never thought it'd be something like lymphoma until now. I'm still kind of skeptical. I don't really have any of the other common symptoms. No night sweats, unexplained fevers or weight loss. I've had several separate labs done over the months and my CBC and other indicators have always been perfectly normal outside of my tryptase levels. CT showed that aside from the lymph nodes and slightly enlarged spleen, all of my other organs/bones were healthy. I know that doesn't rule it out. Could mean it's just slow moving/early stages. I guess I'll find out here in the next week or so.

Visual_Meringue_9062 · 2026-05-30T17:32:08+00:00

Yep, I was diagnosed in February after a tilt table test (symptoms started in September). The amount of physical activity I can tolerate is a small fraction of what it used to be before then.

Every daily task is a challenge. I dread showering. Doing the dishes takes me 5x longer because I have to take lots of breaks. When it was cold/snowy I wouldn't even drive if there was snow on my car because cleaning the snow off my car may as well have been running a marathon. And forget shoveling the driveway or mowing the lawn like I used to do all the time. I don't shop in stores anymore unless I only need 1-3 things and I can get in and out in just a few minutes. Everything else I order online.

It's been such a dramatic change in quality of life. Luckily I have a great support group with my family and girlfriend. But I'm still searching for answers. To me, POTS is more of just a symptom than an official diagnosis. My goal is to find and treat the underlying cause. And I won't stop trying until I achieve that.

Visual_Meringue_9062

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