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Swollen Lymph Node for 10 months?
Hello,
I'm a 32 year old woman and since April of 2018, I have been feeling extremely ill with a slew of symptoms that are not normal for me personally. Also, I never know if the symptoms I'm describing are all related, but since they are not normal for me and they all started at the same time (almost overnight) I usually mention them.
My first symptoms were swollen lymph nodes on the back of my neck which subsided about 2 months after first coming on, a swollen lymph node on the right side of my neck behind my ear that grew overnight and has stayed hard, fixed, and swollen since April, difficulty breathing (a painful feeling, like when you breath in very cold air) especially on exertion although I was extremely active and fit when the symptoms started, painful joints, face/hand/knee rashes, extreme fatigue and weakness (often cannot walk up stairs, cannot hold things for more than 10 seconds, cannot carry on a conversation for more than a few minutes without feeling exhausted, etc.), lesions in my nose and on scalp, itchiness which feels deep and "un-itchable"(if that makes sense!), restless legs, drooping of right eyelid and side of mouth. One of my most troublesome symptoms is severe, painful stomach aches upon eating or drinking anything, even water. The pain in high up, right below my sternum, and feels like my stomach is full of food, even after waking up and not having eaten for 10 hours. I also had low vitamin D (14ng/mL ref. 30-100ng/mL) and hypochromic, microcytic anemia when my blood was first tested. Both of which I was put on a supplement for, but have not felt any better with these supplements. I also went on antibiotics but did not feel better.
This might not be related, but I went to an oral surgeon in December and was told I have stage V TMJ derangement (severe joint deformity with degenerative condylar changes). The oral surgeon said he thought it was from an underlying autoimmune condition or degenerative disease).
In the past two months (since December 2018), I have been having really intense night sweats, a lower back discomfort that is not quite painful but instead a deep ache that won't get better with stretching, heat, massage, etc. and that is much worse at night/when lying down. and have experienced such worsening fatigue to the extent that I often miss work and have missed over two weeks combined since December. My PCP referred me to an ENT to have a lymph node biopsy a few weeks ago (he specifically mentioned Lymphoma), but the ENT said that because my lymph node was only 9mm, she would not biopsy because there would literally be nothing that would show up because it's not active. I had read a little about the sizes of lymph nodes in prep for a possible biopsy and had seen that it might be useful in some cases to biopsy if the lymph node is under 1cm? Also, I feel like for months and months the lymph node has been much bigger, sometimes people comment how they can see it.
I have been tested for a bunch of autoimmune diseases, as that was what it was first thought to be, but none came back as being positive (Lupus, RA, Scleroderma, Celiac, IBD, Thyroid Disease, Myasthenia Gravis), as well as negative for Lyme Disease, Mono, HIV, EBV, etc.
I have had some abnormalities in my blood in addition to the nutrient deficiencies, including very low ANA (1.27, 1:80), elevated ESR and CRP, elevated platelets.
My real question is...does it seem like I should press for a biopsy or some kind of imaging of my lymph node or of my back or anything? I definitely trust that the doctors I've seen know what they're doing, but I just feel so incredibly ill that my main concern is I will be unable to work soon and not have insurance for tests or treatment and so am trying to get to the bottom of it before this happens. My PCP didn't seem concerned that the ENT didn't want to biopsy and just wants to "wait and see" how I feel, but I don't feel like I have time to wait, as each day I feel sicker and less able to go to work, doctor's appointments (let alone do literally anything I used to enjoy doing!).
Thank you so, so much for reading through this and for any advice you might be able to offer.
I'm a 32 year old woman and since April of 2018, I have been feeling extremely ill with a slew of symptoms that are not normal for me personally. Also, I never know if the symptoms I'm describing are all related, but since they are not normal for me and they all started at the same time (almost overnight) I usually mention them.
My first symptoms were swollen lymph nodes on the back of my neck which subsided about 2 months after first coming on, a swollen lymph node on the right side of my neck behind my ear that grew overnight and has stayed hard, fixed, and swollen since April, difficulty breathing (a painful feeling, like when you breath in very cold air) especially on exertion although I was extremely active and fit when the symptoms started, painful joints, face/hand/knee rashes, extreme fatigue and weakness (often cannot walk up stairs, cannot hold things for more than 10 seconds, cannot carry on a conversation for more than a few minutes without feeling exhausted, etc.), lesions in my nose and on scalp, itchiness which feels deep and "un-itchable"(if that makes sense!), restless legs, drooping of right eyelid and side of mouth. One of my most troublesome symptoms is severe, painful stomach aches upon eating or drinking anything, even water. The pain in high up, right below my sternum, and feels like my stomach is full of food, even after waking up and not having eaten for 10 hours. I also had low vitamin D (14ng/mL ref. 30-100ng/mL) and hypochromic, microcytic anemia when my blood was first tested. Both of which I was put on a supplement for, but have not felt any better with these supplements. I also went on antibiotics but did not feel better.
This might not be related, but I went to an oral surgeon in December and was told I have stage V TMJ derangement (severe joint deformity with degenerative condylar changes). The oral surgeon said he thought it was from an underlying autoimmune condition or degenerative disease).
In the past two months (since December 2018), I have been having really intense night sweats, a lower back discomfort that is not quite painful but instead a deep ache that won't get better with stretching, heat, massage, etc. and that is much worse at night/when lying down. and have experienced such worsening fatigue to the extent that I often miss work and have missed over two weeks combined since December. My PCP referred me to an ENT to have a lymph node biopsy a few weeks ago (he specifically mentioned Lymphoma), but the ENT said that because my lymph node was only 9mm, she would not biopsy because there would literally be nothing that would show up because it's not active. I had read a little about the sizes of lymph nodes in prep for a possible biopsy and had seen that it might be useful in some cases to biopsy if the lymph node is under 1cm? Also, I feel like for months and months the lymph node has been much bigger, sometimes people comment how they can see it.
I have been tested for a bunch of autoimmune diseases, as that was what it was first thought to be, but none came back as being positive (Lupus, RA, Scleroderma, Celiac, IBD, Thyroid Disease, Myasthenia Gravis), as well as negative for Lyme Disease, Mono, HIV, EBV, etc.
I have had some abnormalities in my blood in addition to the nutrient deficiencies, including very low ANA (1.27, 1:80), elevated ESR and CRP, elevated platelets.
My real question is...does it seem like I should press for a biopsy or some kind of imaging of my lymph node or of my back or anything? I definitely trust that the doctors I've seen know what they're doing, but I just feel so incredibly ill that my main concern is I will be unable to work soon and not have insurance for tests or treatment and so am trying to get to the bottom of it before this happens. My PCP didn't seem concerned that the ENT didn't want to biopsy and just wants to "wait and see" how I feel, but I don't feel like I have time to wait, as each day I feel sicker and less able to go to work, doctor's appointments (let alone do literally anything I used to enjoy doing!).
Thank you so, so much for reading through this and for any advice you might be able to offer.
COMMUNITY LEADER
Hi, let's start with your exact question, "does it seem like I should press for a biopsy or some kind of imaging of my lymph node or of my back or anything?"
I wouldn't want a biopsy at all, because that would only get in the way of finding the real cause. I think the real cause is very complicated but also is actually very identifiable here. But first let's discuss why it's very unlikely to be cancer.
"subsided about 2 months after first coming on"
"they all started at the same time (almost overnight)"
Cancerous nodes don't behave like that. Cancer doesn't grow super fast and then just decide to stop growing for months and months, or just go partly away.
"that grew overnight and has stayed hard, fixed, and swollen since April"
There are two reasons that a node can stay enlarged for an excessively long time, while still being not-cancer: (1) you're still having an immune reaction that keeps the inflammation going, and/or (2) some things have formed inside, that take a very long time to get chipped away, if ever. Those would be fibrosis (scar tissue) made by immune cells, and/or granulomas; both are made by immune cells.
"it might be useful in some cases to biopsy if the lymph node is under 1cm?"
Are yours rounded, rather than long ellipses? Do they keep growing? Other new ones still popping up? Those are bad signs.
That leads us to having a scan or not (which should be a sonogram rather than CT or MRI). If the sono shows a fatty hilum and normal 'architecture' and a shape where the length is at least 2x the width, then you can really believe it's not-cancer. Though if the reverse is true, that still doesn't mean that it is cancer, because severe inflammation can mimic those effects.
But I don't think that a sono is really called for at this point - because it seems very much more like immune system dysfunction. Not autoimmune, but auto-inflammatory and centering on mast cells with probably eosinophils thrown in also.
"I feel like for months and months the lymph node has been much bigger"
It's often hard to tell exactly without a scan because there can be associated swelling. When you say 9mm, do you mean the long dimension (called 'axis') or the short axis?
I wouldn't want a biopsy at all, because that would only get in the way of finding the real cause. I think the real cause is very complicated but also is actually very identifiable here. But first let's discuss why it's very unlikely to be cancer.
"subsided about 2 months after first coming on"
"they all started at the same time (almost overnight)"
Cancerous nodes don't behave like that. Cancer doesn't grow super fast and then just decide to stop growing for months and months, or just go partly away.
"that grew overnight and has stayed hard, fixed, and swollen since April"
There are two reasons that a node can stay enlarged for an excessively long time, while still being not-cancer: (1) you're still having an immune reaction that keeps the inflammation going, and/or (2) some things have formed inside, that take a very long time to get chipped away, if ever. Those would be fibrosis (scar tissue) made by immune cells, and/or granulomas; both are made by immune cells.
"it might be useful in some cases to biopsy if the lymph node is under 1cm?"
Are yours rounded, rather than long ellipses? Do they keep growing? Other new ones still popping up? Those are bad signs.
That leads us to having a scan or not (which should be a sonogram rather than CT or MRI). If the sono shows a fatty hilum and normal 'architecture' and a shape where the length is at least 2x the width, then you can really believe it's not-cancer. Though if the reverse is true, that still doesn't mean that it is cancer, because severe inflammation can mimic those effects.
But I don't think that a sono is really called for at this point - because it seems very much more like immune system dysfunction. Not autoimmune, but auto-inflammatory and centering on mast cells with probably eosinophils thrown in also.
"I feel like for months and months the lymph node has been much bigger"
It's often hard to tell exactly without a scan because there can be associated swelling. When you say 9mm, do you mean the long dimension (called 'axis') or the short axis?
3 Comments
Hi,
Thank you so much for your response!
The lymph nodes are rounded. The one behind my ear has been very large and visible but in the last month or so doesnt seem quite as visible. I think I may have gotten one in my groin area, as well, but have never had one in that area so I’m not sure if that’s what it is.
I am not sure exactly which axis the ENT was talking about, as she just felt the lymph node and said “it’s only 9mm” and did not explain further.
In terms of the Eosinophils- each time I have had a CBC done, I have had low Eosinophils (0.0% - ref. 0.6%-7.6%) as well as low Basophils (0.1% -ref. 0.3%-1.7%) i have tried researching this but found almost no info. Would this info point to anything?
Thank you so much again.
Thank you so much for your response!
The lymph nodes are rounded. The one behind my ear has been very large and visible but in the last month or so doesnt seem quite as visible. I think I may have gotten one in my groin area, as well, but have never had one in that area so I’m not sure if that’s what it is.
I am not sure exactly which axis the ENT was talking about, as she just felt the lymph node and said “it’s only 9mm” and did not explain further.
In terms of the Eosinophils- each time I have had a CBC done, I have had low Eosinophils (0.0% - ref. 0.6%-7.6%) as well as low Basophils (0.1% -ref. 0.3%-1.7%) i have tried researching this but found almost no info. Would this info point to anything?
Thank you so much again.
The eosinophils can create bad problems in the digestive tract, such as Eosinophilic Esophagitis (EoE). Do you ever get food stuck in the esophagus on the way down? That's one effect.
But the eosinophil count found on a CBC doesn't matter so much, because that's measured in the blood circulation. People with EoE instead need a endoscope doing a snipping biopsy.
Since you also mention basophils, I can see that you know a lot already - since they are the circulating cousins of mast cells (MCs).
MCs line the GI and the *lungs* in quantity. You can say that MCs summon the eosinphils to the esophagus, where they can cause a lot of harm through 'remodeling'.
MCs also line the skin and cause rash and itching via histamine.
See how it's all probably tying together?
Do you flush/blush a lot?
But the eosinophil count found on a CBC doesn't matter so much, because that's measured in the blood circulation. People with EoE instead need a endoscope doing a snipping biopsy.
Since you also mention basophils, I can see that you know a lot already - since they are the circulating cousins of mast cells (MCs).
MCs line the GI and the *lungs* in quantity. You can say that MCs summon the eosinphils to the esophagus, where they can cause a lot of harm through 'remodeling'.
MCs also line the skin and cause rash and itching via histamine.
See how it's all probably tying together?
Do you flush/blush a lot?
Interesting... I do have trouble swallowing and have had several tests for dysphasia some years ago (barium swallow and dysphagiagram) It was eventually determined that I “might just have reflux”. I also have a Globus sensation. These swallowing symptoms have been happening for around 10 years.
I do flush a lot. And I keep getting the face flushing or rash on my cheeks which was why I was tested for lupus initially.
Yes, it does all seem to be tying together! I am so grateful for all of these ideas and explanations. It would be amazing if I were able to find a treatment based on some of your ideas!
I do flush a lot. And I keep getting the face flushing or rash on my cheeks which was why I was tested for lupus initially.
Yes, it does all seem to be tying together! I am so grateful for all of these ideas and explanations. It would be amazing if I were able to find a treatment based on some of your ideas!
COMMUNITY LEADER
As a related issue...
"stage V TMJ derangement"
Are you long and thin? Hyperflexible and/or with very stretchy skin?
If so: EDS (Ehlers Danlos Syndrome) is a connective tissue disorder that can result in TMJ problems.
https://www.ehlers-danlos.com/2012-annual-conference-files/Mitakides_EDS_TMJ_FINAL_AUG_8_2012_3notesS.pdf
EDS is associated with mast cell disorders.
"stage V TMJ derangement"
Are you long and thin? Hyperflexible and/or with very stretchy skin?
If so: EDS (Ehlers Danlos Syndrome) is a connective tissue disorder that can result in TMJ problems.
https://www.ehlers-danlos.com/2012-annual-conference-files/Mitakides_EDS_TMJ_FINAL_AUG_8_2012_3notesS.pdf
EDS is associated with mast cell disorders.
4 Comments
When researching about my jaw, I did see that condition, but I do not have any of those things and am very average height (5’7”) and 160lbs. No stretchy skin and actually very inflexible (despite lots of yoga!)
Well, it turns out that being very inflexible is also a sign of a connective tissue disorder - since it's also abnormal collagen. So let's call this CTD instead of EDS.
There is a theory that since MCs oversee the creation of CT, then an MC disorder can lead to a CT disorder by making defective collagen.
There is a theory that since MCs oversee the creation of CT, then an MC disorder can lead to a CT disorder by making defective collagen.
...and trying to stretch might cause only injuries without any benefit. Does that happen with you?
Oh that’s interesting! I have always been very inflexible without getting any less flexible despite yoga, stretching “programs”, etc. I am not sure if I’ve ever been injured while stretching, but do feel like it makes me more sore at times, rather than feeling relief.
COMMUNITY LEADER
Did something occur right before the onset of all these problems? Like a very bad cold or an accident, and/or extreme stress?
3 Comments
No, nothing like that. It was all very bizarre. I was completely fine one day, the next day I woke up feeling horrible with all of these symptoms, though maybe I had worked out too hard the previous day or something, and haven’t felt better ever since.
Btw, being a "young, very fit female" is a common profile for immune disorders like Chronic Fatigue Syndrome and MC disorders like MCAS. It often takes years to get diagnosed, even when seeing many docs.
Do you get ill these days from exercise (exercise intolerance)?
Do you get ill these days from exercise (exercise intolerance)?
Actually, it’s funny, I literally told my roommate yesterday “why doesn’t working out ever make me feel good anymore?” I often feel nauseous, light-headed and have general malaise after working out, but wondered if it has just been from feeling so awful for so long.
COMMUNITY LEADER
"I think I may have gotten one in my groin area"
Generalized lymphadenopathy. That's a little worrying, though not necessarily cancer.
Did you travel anywhere that there would be unusual pathogens like parasites or bacteria or virus that a local doc wouldn't expect?
Generalized lymphadenopathy. That's a little worrying, though not necessarily cancer.
Did you travel anywhere that there would be unusual pathogens like parasites or bacteria or virus that a local doc wouldn't expect?
1 Comments
I haven’t been out of the country since I was 14, though I have travelled to Phoenix several times, as my family is there. I know there are things like valley fever, but don’t really know the symptoms of that.
COMMUNITY LEADER
React very badly to bee stings? Many allergies, with you or family? Odd immune system disorders like Raynauds or Lupus, Sjogrens?
1 Comments
I’ve never been stung by a bee, so I’m not sure. I do think I have some food sensitivities but probably nothing full blown like Celiac. And I haven’t tested positive for the antibodies for any of those autoimmune disorders, only weakly positive for ANA.
COMMUNITY LEADER
"have general malaise after working out"
It has a name: PEM. Post Exercise Malaise.
Some say that if they push it, they dig a much deeper hole. Others don't.
Well, ajacobs, I think we are 85% to am answer :) Just the details remain. Plus that little 'detail' of convincing your doctors.
I am very glad to be of help and this has been enjoyable... because it's going so well :)
That's not a brushoff, there are still those 'more details'. And please ask any questions that you have.
It has a name: PEM. Post Exercise Malaise.
Some say that if they push it, they dig a much deeper hole. Others don't.
Well, ajacobs, I think we are 85% to am answer :) Just the details remain. Plus that little 'detail' of convincing your doctors.
I am very glad to be of help and this has been enjoyable... because it's going so well :)
That's not a brushoff, there are still those 'more details'. And please ask any questions that you have.
1 Comments
I think so!!! This has been so incredibly helpful and I’m so grateful for all of these ideas! It has been very enjoyable, I finally feel like I might be seeing a picture form! You are amazing! :)
I did want to ask... are there any tests you would suggest me asking my doctor to order?
Thank you so much again!
I did want to ask... are there any tests you would suggest me asking my doctor to order?
Thank you so much again!
COMMUNITY LEADER
This is very important: do you flush spontaneously, without exercise or heat or any other trigger? Just out of the blue?
(mastocytosis)
(mastocytosis)
1 Comments
Yes, it is just random. Like sitting on my couch, walk into the bathroom and my face and chest is completely red!
COMMUNITY LEADER
"I haven’t tested positive for the antibodies for any of those autoimmune disorders,"
Okay, good. Though keep in mind that this isn't autoimmune (which requires auto antibodies or t-cells). This is auto inflammatory, because mast cells go off too easily and too strongly.
Mast cells have many dozens of inputs (receptors) and hundreds of outputs (chemical mediators, such as histamine). They use those mediators to orchestrate other immune cells, even other MCs.
Btw, ~10% of normal people show ANA on tests but are completely healthy. It's not a simple thing.
Okay, good. Though keep in mind that this isn't autoimmune (which requires auto antibodies or t-cells). This is auto inflammatory, because mast cells go off too easily and too strongly.
Mast cells have many dozens of inputs (receptors) and hundreds of outputs (chemical mediators, such as histamine). They use those mediators to orchestrate other immune cells, even other MCs.
Btw, ~10% of normal people show ANA on tests but are completely healthy. It's not a simple thing.
COMMUNITY LEADER
"Yes, it is just random. Like sitting on my couch, walk into the bathroom and my face and chest is completely red!"
Okay, that opens the door for a firm diagnosis through blood tests. Not just by symptoms. Did you tell this to any doctor?
Mastocytosis means too many mast cells.
Do you get long term brown or red speckles on your skin? Almost like freckles. (Urticaria pigmentosa)
Can you draw a line on your sternum and it is pronounced and stays a while (dermographia)?
Okay, that opens the door for a firm diagnosis through blood tests. Not just by symptoms. Did you tell this to any doctor?
Mastocytosis means too many mast cells.
Do you get long term brown or red speckles on your skin? Almost like freckles. (Urticaria pigmentosa)
Can you draw a line on your sternum and it is pronounced and stays a while (dermographia)?
1 Comments
I do get speckles on my skin, especially face and upper arms, but the don’t seem to be raised up like in the pictures when I searched for Urticaria pigmentosa. And I don’t believe I have had dermographia. It seems like it turns white when pressed on, but doesn’t raise up.
COMMUNITY LEADER
Now imagine a roughly similar thing happening from MCs in your GI tract. Pain, highly irritable, food sensitivities, no appetite.
In the lungs, something similar but with leukotrienes as mediators. Out of breath when passages constrict.
In the lungs, something similar but with leukotrienes as mediators. Out of breath when passages constrict.
1 Comments
That makes a lot of sense!! And I do have all of those symptoms.
I did have an endoscopy and colonoscopy in November to check for IBD and Celiac. Though those were negative, on the pathology results for my stomach it said:
Sections (C, D) show fragments of antral/fundic-type mucosa
demonstrating moderate foveolar/pit hyperplasia and some smooth muscle extension within the lamina propria. There are minimal to mild chronic inflammatory Infiltrates with no neutrophilic inflammatory activity. There is no evidence of H. pylori organisms, glandular atrophy, intestinal metaplasia, dysplasia or malignancy. An immunohistochemical stain performed for H. pylori organisms is negative (C, D).
C. Stomach, antrum, biopsy:
- Minimal chronic inflammation and reactive changes, consistent with
reactive/chemical gastritis.
- Negative for H. pylori organisms.
D. Stomach, body, biopsy:
- Minimal chronic inflammation and reactive changes, consistent with
reactive/chemical gastritis.
- Negative for H. pylori organisms.
Does this fall in line with a Mastocytosis?
I did have an endoscopy and colonoscopy in November to check for IBD and Celiac. Though those were negative, on the pathology results for my stomach it said:
Sections (C, D) show fragments of antral/fundic-type mucosa
demonstrating moderate foveolar/pit hyperplasia and some smooth muscle extension within the lamina propria. There are minimal to mild chronic inflammatory Infiltrates with no neutrophilic inflammatory activity. There is no evidence of H. pylori organisms, glandular atrophy, intestinal metaplasia, dysplasia or malignancy. An immunohistochemical stain performed for H. pylori organisms is negative (C, D).
C. Stomach, antrum, biopsy:
- Minimal chronic inflammation and reactive changes, consistent with
reactive/chemical gastritis.
- Negative for H. pylori organisms.
D. Stomach, body, biopsy:
- Minimal chronic inflammation and reactive changes, consistent with
reactive/chemical gastritis.
- Negative for H. pylori organisms.
Does this fall in line with a Mastocytosis?
COMMUNITY LEADER
Yes, there is an established procedure for testing.
After you flush, you immediately get a serum tryptase level done. Before the perishable tryptase breaks down and is gone. It even gets sent in to a specialty lab on ice.
Or in urine, methyl histamine. Maybe a skin biopsy to count MCs. Maybe a genetic test for Kit mutation.
Don't get frightened when reading about systemic mastocytosis because I don't think you have that.
Treatment is mainly various antihistamines. They block the effect of histamine, like jamming a wrong key in a lock. Also mast cell stabilizers - some of which just come from plants and can work better than drugs - to keep the MCs from going off too easily and too powerfully.
Also identifying triggers (which is not necessarily easy) and eliminating them. It's management, not cure.
Sorry to say, it won't be a quick and easy thing. But far far better than going many many more months without help and even no answer.
After you flush, you immediately get a serum tryptase level done. Before the perishable tryptase breaks down and is gone. It even gets sent in to a specialty lab on ice.
Or in urine, methyl histamine. Maybe a skin biopsy to count MCs. Maybe a genetic test for Kit mutation.
Don't get frightened when reading about systemic mastocytosis because I don't think you have that.
Treatment is mainly various antihistamines. They block the effect of histamine, like jamming a wrong key in a lock. Also mast cell stabilizers - some of which just come from plants and can work better than drugs - to keep the MCs from going off too easily and too powerfully.
Also identifying triggers (which is not necessarily easy) and eliminating them. It's management, not cure.
Sorry to say, it won't be a quick and easy thing. But far far better than going many many more months without help and even no answer.
1 Comments
Is there a specific specialist that would run these tests or would it be fine for my primary care doctor to order them?
Is the biopsy performed anywhere on the skin? I do have several scalp lesions that get "scabby" and have caused small patches of my hair to fall out.
It is far better to feel like I am on the right path, that is for sure! I am so grateful that you've suggested all of these things. I feel more hopeful than I have for months! And it is so kind of you to answer all of these questions for strangers, especially when it doesn't relate to the original topic! Thank you so so much!
Is the biopsy performed anywhere on the skin? I do have several scalp lesions that get "scabby" and have caused small patches of my hair to fall out.
It is far better to feel like I am on the right path, that is for sure! I am so grateful that you've suggested all of these things. I feel more hopeful than I have for months! And it is so kind of you to answer all of these questions for strangers, especially when it doesn't relate to the original topic! Thank you so so much!
COMMUNITY LEADER
"Does this fall in line with a Mastocytosis?"
Being inflammatory and reactive is consistent with all of this.
-----mastocystosis is too many MCs, which also are dysfunctional
-----MCAS is normal number of MCs, which are dysfunctional
Remember this well for the future: MCs don't show up in usual staining methods, so the pathologist HAS to be told by doc's order to look for MCs with special staining.
Being inflammatory and reactive is consistent with all of this.
-----mastocystosis is too many MCs, which also are dysfunctional
-----MCAS is normal number of MCs, which are dysfunctional
Remember this well for the future: MCs don't show up in usual staining methods, so the pathologist HAS to be told by doc's order to look for MCs with special staining.
2 Comments
Okay, that is good to remember. Thank you thank you!
Also, looking at the website for the Mastoytosis Society, many of the symptoms they list I also have, but never think to mention because they are more secondary or don't seem as prominent, like : uterine cramps or bleeding, telangiectatic lesions, bone/muscle pain, blood pressure instability, brain fog, cognitive dysfunction, tachycardia....
Also, looking at the website for the Mastoytosis Society, many of the symptoms they list I also have, but never think to mention because they are more secondary or don't seem as prominent, like : uterine cramps or bleeding, telangiectatic lesions, bone/muscle pain, blood pressure instability, brain fog, cognitive dysfunction, tachycardia....
I was just going to ask about brain fog... probably it's from immune chemicals.
There's little doubt now about what you have. Yes, TMC is a good site but then there are valuable more-edge things, too. Lots of self experimentation, also. It'll be an adventure for you :) Then you can teach your docs.
Bye for now. This was a good afternoon :)
There's little doubt now about what you have. Yes, TMC is a good site but then there are valuable more-edge things, too. Lots of self experimentation, also. It'll be an adventure for you :) Then you can teach your docs.
Bye for now. This was a good afternoon :)
COMMUNITY LEADER
You are welcome!
Sorry, I have to go for now, so let's talk tomorrow about which doctor. It's best to get one who knows these things by experience with relevant patients, not just any immunologist etc. If possible.
You can find an intro youtube from Dr Afrin with '101' in the title. He's a famous MC doc. The venerable grandaddy of this topic is Dr. Theoharides. You are very sharp and will pick up these things quickly.
And please let me know how things go along the process. I would really like to know, if you don't mind.
Sorry, I have to go for now, so let's talk tomorrow about which doctor. It's best to get one who knows these things by experience with relevant patients, not just any immunologist etc. If possible.
You can find an intro youtube from Dr Afrin with '101' in the title. He's a famous MC doc. The venerable grandaddy of this topic is Dr. Theoharides. You are very sharp and will pick up these things quickly.
And please let me know how things go along the process. I would really like to know, if you don't mind.
1 Comments
Thank you! I will for sure check those videos out!
I will definitely let you know! You have been such a huge help, I cannot even begin to tell you! Have a wonderful day! :)
I will definitely let you know! You have been such a huge help, I cannot even begin to tell you! Have a wonderful day! :)
COMMUNITY LEADER
"Is there a specific specialist that would run these tests or would it be fine for my primary care doctor to order them?"
Your pcp can and should do the screening tests. Are they open to suggestion, do you think? Or do we need to prepare an evidence based case to convince them? I believe you'll need an order that you can use to rush to get a blood draw immediately after a flushing attack.
Remember this well: I think the sample has to be sent in to a specialty lab ON ICE or it gets degraded.
Then the pcp has to know what to do with the test results.
I know that Theoharides has had a mastocytosis article published in a top journal, maybe BMJ or Lancet. That should convince any doc that this is not just some flighty thing.
There would also be a WHO classification for this. That's useful because it seems that no doc that you have seen so far is aware of mast cell diseases.
Organizations like TMS always have a list of docs that specialize, but the list is likely short.
Your pcp can and should do the screening tests. Are they open to suggestion, do you think? Or do we need to prepare an evidence based case to convince them? I believe you'll need an order that you can use to rush to get a blood draw immediately after a flushing attack.
Remember this well: I think the sample has to be sent in to a specialty lab ON ICE or it gets degraded.
Then the pcp has to know what to do with the test results.
I know that Theoharides has had a mastocytosis article published in a top journal, maybe BMJ or Lancet. That should convince any doc that this is not just some flighty thing.
There would also be a WHO classification for this. That's useful because it seems that no doc that you have seen so far is aware of mast cell diseases.
Organizations like TMS always have a list of docs that specialize, but the list is likely short.
1 Comments
I'm not quite sure my PCP is open to a lot of suggestion. He's very nice but I think after running a lot of tests, he thinks that it's just symptoms caused by a depressed mood (though I became depressed BECAUSE I have felt sick for so long!). But perhaps if I prepare some evidence and references, he would be more receptive.
I did look up if there were any doctors that treated Mast Cell Diseases near me and it appears there is an allergist/immunologist who treats them (according to his website). I don't know if I should give someone like that a shot?
Again, you have been so helpful!! Thank you, as always.
I did look up if there were any doctors that treated Mast Cell Diseases near me and it appears there is an allergist/immunologist who treats them (according to his website). I don't know if I should give someone like that a shot?
Again, you have been so helpful!! Thank you, as always.
COMMUNITY LEADER
Btw, when I'd said not to worry because you "don't have that", the "that" I was referring to was the version that's like a cancer.
You do have more than just the cutaneous kind, so it's systemic. (These subtypes can and probably will change in the future anyway, that shows you that it's not all set in stone.)
You do have more than just the cutaneous kind, so it's systemic. (These subtypes can and probably will change in the future anyway, that shows you that it's not all set in stone.)
1 Comments
That's a relief! And also interesting with the subtypes. When delving into some of the information on Mast Cell Diseases, it seemed like there were quite a few, and quite overwhelming!
COMMUNITY LEADER
Okay, first things first. To send the minimal to your pcp that he can scan through quickly:
1) WHO has clasified this condition, send only the url (and maybe the title): http://www.bloodjournal.org/content/127/20/2391.long?sso-checked=true#T9
That means that WHO says this is not just some flaky thing. Also, every doc has heard of Blood Journal, so he'll know it's not one of the tens of thousands of little med journals that he wouldn't take seriously. That's Table 9 there.
2) Next, Dr. Theoharides has an overview published in the even more prestigious NEJM, which your pcp undoubtedly subscribes to: https://www.nejm.org/doi/full/10.1056/NEJMra1409760 This shows that NEJM also says it is not just some flaky thing.
3) Then, if he wants to know the Dx procedure, also include this url: https://tmsforacure.org/overview/ which is made by MC doctors.
Yes, you should want to ultimately go to the doc you found (good work!) that advertises that they deal in MCs. But as a courtesy you of course go through your pcp first. Maybe the MC doc requires a referral anyway because they are swamped with these cases, or maybe not.
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If you feel like your head is going to explode from all this, then you're doing it right :)
1) WHO has clasified this condition, send only the url (and maybe the title): http://www.bloodjournal.org/content/127/20/2391.long?sso-checked=true#T9
That means that WHO says this is not just some flaky thing. Also, every doc has heard of Blood Journal, so he'll know it's not one of the tens of thousands of little med journals that he wouldn't take seriously. That's Table 9 there.
2) Next, Dr. Theoharides has an overview published in the even more prestigious NEJM, which your pcp undoubtedly subscribes to: https://www.nejm.org/doi/full/10.1056/NEJMra1409760 This shows that NEJM also says it is not just some flaky thing.
3) Then, if he wants to know the Dx procedure, also include this url: https://tmsforacure.org/overview/ which is made by MC doctors.
Yes, you should want to ultimately go to the doc you found (good work!) that advertises that they deal in MCs. But as a courtesy you of course go through your pcp first. Maybe the MC doc requires a referral anyway because they are swamped with these cases, or maybe not.
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If you feel like your head is going to explode from all this, then you're doing it right :)
1 Comments
This is all such great information! What an amazing person you are to provide all of this. I am so grateful!
I will give my PCP this information and see what he'd like to do! I'm hoping he will be receptive to it!
It is a LOT of info, but I'm so happy that you recognized something in my symptoms and have been kind enough to impart all of this knowledge on me. So, I will take the head-exploding if it means that I might be on the right track!! :)
I will give my PCP this information and see what he'd like to do! I'm hoping he will be receptive to it!
It is a LOT of info, but I'm so happy that you recognized something in my symptoms and have been kind enough to impart all of this knowledge on me. So, I will take the head-exploding if it means that I might be on the right track!! :)
COMMUNITY LEADER
"that it's just symptoms caused by a depressed mood (though I became depressed BECAUSE I have felt sick for so long!)"
That happens also to many thousands of Pts worldwide, when it comes to nebulous immune system conditions. But when you included the list of even more symptoms, that was also even more of a tipoff, at least to me and almost certainly to the doc you found.
E.g, histamine is a vasodilator, so when flooded with it and other mediators, that would lower BP. Known from long ago: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1666775/
"The effects of histamine and some histamine-like agonists on blood pressure in the cat." 1975
That happens also to many thousands of Pts worldwide, when it comes to nebulous immune system conditions. But when you included the list of even more symptoms, that was also even more of a tipoff, at least to me and almost certainly to the doc you found.
E.g, histamine is a vasodilator, so when flooded with it and other mediators, that would lower BP. Known from long ago: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1666775/
"The effects of histamine and some histamine-like agonists on blood pressure in the cat." 1975
1 Comments
The blood pressure information is also interesting! The first time I went to the doctor with my current symptoms back in April, the had to take my blood pressure three times - the first time it was very low, so they took it again to make sure it was correct. When it still came back very low, they took it later in the appointment to make sure it had gone up a little before they sent me home!
COMMUNITY LEADER
Thank you! It's great to be appreciated :) You've suffered a lot, and I'm glad to help. So don't think you might be imposing.
Here's a fact which you will be able to now appreciate: Pepcid and that whole class of stomach antacids? They're actually antihistamines. So is Sominex.
Interesting story about your BP. Did they say, "you're just that way naturally"? That's not true. Btw, for the entire future, tell this background about your BP to any doc (even a dentist) before you get anesthesia.
And... tachycardia can be a reflexive response to low BP.
Here's a fact which you will be able to now appreciate: Pepcid and that whole class of stomach antacids? They're actually antihistamines. So is Sominex.
Interesting story about your BP. Did they say, "you're just that way naturally"? That's not true. Btw, for the entire future, tell this background about your BP to any doc (even a dentist) before you get anesthesia.
And... tachycardia can be a reflexive response to low BP.
COMMUNITY LEADER
...and it's suspenseful about what the pcp will say. Are you going to submit that today online?
Maybe tomorrow we can get into why extracts of cherries or olives might be very helpful. (Mast cell stabilizers.)
Maybe tomorrow we can get into why extracts of cherries or olives might be very helpful. (Mast cell stabilizers.)
1 Comments
It is! I worry whenever I suggest anything to my PCP because I don’t want him to think I’m over stepping. I did, yes, but it sometimes takes a few days for them to respond! Is this a condition that a lot of health care professionals don’t put much weight in?
Thank you, that would be fantastic!
Thank you, that would be fantastic!
COMMUNITY LEADER
It would be entirely unreasonable for the pcp to react negatively. Doctors do get bombarded all the time with printouts from blogs like "The Ultimate Guide to Cosmic Health". But we instead submitted high grade authoritative sources.
1 Comments
Haha, oh no! Yes, these resources are much better than “crystal healing”....
COMMUNITY LEADER
I have to correct myself. The test that needs to be sent on ice is the urine test sample, not the tryptase blood test.
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MCAD can cause enlarged nodes anywhere. MCAD is the umbrella term for mastocytosis and MCAS. The WHO has a classification for mastocytosis, but not for MCAS as far as I know. I'm guessing that you have mastocytosis (not just MCAS) because you get *spontaneous* flushing, besides from triggers.
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Drugs are probably more powerful than natural substances in most cases. But not always.
"Quercetin Is More Effective than Cromolyn in Blocking Human Mast Cell Cytokine Release and Inhibits Contact Dermatitis and Photosensitivity in Humans"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3314669/ 2012
Quercetin is a 'flavonoid' plant compound, found in onions, citrus, berries, etc. This experiment shows that it works better than the very expensive drug cromolyn, as a mast cell stabilizer preventing the release from MCs of powerful inflammatory biochemicals called cytokines.
Other flavonoids do similar things, like fisetin from strawberries. Just as there is a very large variety of symptoms in MCAD, there is also variability in which treatments work better in whomever. The flavonoid that Theo uses most is luteolin, from olive pits and olives.
It would probably take a lot of food to equal the amounts in extracts. I have never seen any reports that these flavonoids are harmful. All of this is meant to be a quick overview so that you don't have to pick up things willy nilly from scratch.
1 Comments
I will keep that in mind when I (hopeuflly) am able to get testing done! I will look into some of the extracts and/or supplements. I did start watching some videos that you recommended earlier to use as a resource, and of course all of the info you’ve given me here (so indispensable! Thank you!!). One other thing I was wondering... this would also be the cause of the increased C-Reactive Protein and ESR, yes?
COMMUNITY LEADER
As you know, another thing that a person can try on their own is food elimination. Either you track what you eat and observe what makes you feel bad, or eliminate likely suspects and see if you get better. This can be tricky because a bad food might not take effect for a day or two or three afterwards.
The problem might not come from particular foods per se, but from a component in foods -- like salicylates or oxylates, or especially histamine which is found in some foods. Bacteria in raw fish can generate a lot of histamine if it sits for a while until cooked.
If what happens in your gut creates inflammation in your gut, the inflammation can spread to anywhere and everywhere else. It's like a chain reaction and a rising tide together.
The problem might not come from particular foods per se, but from a component in foods -- like salicylates or oxylates, or especially histamine which is found in some foods. Bacteria in raw fish can generate a lot of histamine if it sits for a while until cooked.
If what happens in your gut creates inflammation in your gut, the inflammation can spread to anywhere and everywhere else. It's like a chain reaction and a rising tide together.
1 Comments
So before I had talked with you, I had started on a low FODMAP diet (only about a week ago) after reading about some of the high FODMAP foods and recognizing that they often caused a lot of pain in my gut. But now I wonder if I should maybe look into more of a diet tailored to histamine production? Unless they are similar? More research it is!
COMMUNITY LEADER
When water triggers a painful reaction in you, that might be because the stomach lining is so inflamed that just the pressure from the water sets things off even worse. You sure have suffered a lot. It's really awful that you get told it's not real.
Temperature is a known trigger in MCAD. Stress of any kind is a very big trigger.
Temperature is a known trigger in MCAD. Stress of any kind is a very big trigger.
2 Comments
That’s such a kind response. I know that I don’t have it as bad as a lot of people, but it’s still counterproductive for the people that you seek help from to dismiss your symptoms as if they dont matter or are something you can just “get over.” If only more health care providers were like you! :)
I do notice feeling worse in those situations, as well! I used to feel like I felt worse when in the sun, but I wonder if that’s the temp increase rather than the sun...hmm!!
Thank you so much for all the responses!!
I do notice feeling worse in those situations, as well! I used to feel like I felt worse when in the sun, but I wonder if that’s the temp increase rather than the sun...hmm!!
Thank you so much for all the responses!!
Also, something interesting, from an article by Dr. Theoharides- “vitamin D deficiency has been associated with increased risk of atopic diseases, possibly through reduced ability to inhibit MCs and other inflammatory cells.” And I have a vitamin D deficiency, a somewhat severe one, says my doctor... more pieces that seem to fit!
COMMUNITY LEADER
"But now I wonder if I should maybe look into more of a diet tailored to histamine production?"
Well, that's for your experimentation. The gut microbiota is a big long-term factor in some people. But consuming histamine can probably have immediate bad effects. There is a hormane called DAO that should break down histamine in the gut. But some people genetically lack that. DAO can be bought as a supplement. On the other hand, some people lack the biochemicals to break down histamine in blood circulation. There's a different supplement for that.
"Unless they are similar?"
Completely different concept and mechanisms. Maybe both have benefit for you.
"...this would also be the cause of the increased C-Reactive Protein and ESR, yes?"
That certainly seems a reasonable assumption, but MCAD is so variable so let' see.
https://www.drtaniadempsey.com/single-post/Ask-The-New-York-City-Mast-Cell-Activation-Syndrome-Expert-Mast-Cell-Activation-Syndrome-Questions-Answered
(Afrin went in on her practice group, moved to the big city so to speak)
"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. We do not yet understand why certain markers are elevated in some patients but are normal in other patients despite seemingly similar types and degrees of symptoms."
"More research it is!"
That's the spirit :)
"but I wonder if that’s the temp increase rather than the sun...hmm!!"
Excellent thinking pattern.
"a vitamin D deficiency, a somewhat severe one"
Though there has been a lot of useless hype over vit D in the past many years, for some people it is a real problem. Have your levels been coming up from taking the D3?
You need magnesium to make D3 from the sun, a lot of people are Mg deficient.
Well, that's for your experimentation. The gut microbiota is a big long-term factor in some people. But consuming histamine can probably have immediate bad effects. There is a hormane called DAO that should break down histamine in the gut. But some people genetically lack that. DAO can be bought as a supplement. On the other hand, some people lack the biochemicals to break down histamine in blood circulation. There's a different supplement for that.
"Unless they are similar?"
Completely different concept and mechanisms. Maybe both have benefit for you.
"...this would also be the cause of the increased C-Reactive Protein and ESR, yes?"
That certainly seems a reasonable assumption, but MCAD is so variable so let' see.
https://www.drtaniadempsey.com/single-post/Ask-The-New-York-City-Mast-Cell-Activation-Syndrome-Expert-Mast-Cell-Activation-Syndrome-Questions-Answered
(Afrin went in on her practice group, moved to the big city so to speak)
"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. We do not yet understand why certain markers are elevated in some patients but are normal in other patients despite seemingly similar types and degrees of symptoms."
"More research it is!"
That's the spirit :)
"but I wonder if that’s the temp increase rather than the sun...hmm!!"
Excellent thinking pattern.
"a vitamin D deficiency, a somewhat severe one"
Though there has been a lot of useless hype over vit D in the past many years, for some people it is a real problem. Have your levels been coming up from taking the D3?
You need magnesium to make D3 from the sun, a lot of people are Mg deficient.
1 Comments
I am definitely going to look into those supplements as well as more into foods containing histamines!
Interesting about the CRP and ESR! It’s also good (well, not good, but reassuring, perhaps?) that it seems to be recognized that symptom severity isn’t necessarily correlated with levels. I have had the experience (and I’m sure a lot of people have!) that only a few abnormalities in blood tests show up despite having awful symptoms, so instead of putting more weight into the symptoms, it’s sometimes like “well, your blood tests are basically normal so the symptoms must not be as bad as you think.”
The levels of my vitamin D have come up slightly, but still in a lower range. I do feel like I am in the sun often so I wonder if I should have my magnesium levels tested....
Thank you again for all of the thoughtful insight!
Interesting about the CRP and ESR! It’s also good (well, not good, but reassuring, perhaps?) that it seems to be recognized that symptom severity isn’t necessarily correlated with levels. I have had the experience (and I’m sure a lot of people have!) that only a few abnormalities in blood tests show up despite having awful symptoms, so instead of putting more weight into the symptoms, it’s sometimes like “well, your blood tests are basically normal so the symptoms must not be as bad as you think.”
The levels of my vitamin D have come up slightly, but still in a lower range. I do feel like I am in the sun often so I wonder if I should have my magnesium levels tested....
Thank you again for all of the thoughtful insight!
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