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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
"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
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
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
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!
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