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Persistent, swollen nodes. Advice?
It's been over a year since I have noticed swollen lymph nodes in my neck (posterior and submandibular chain). At the beginning I thought they are just "shotty" lymph nodes which remained palpable after having infectious mononucleosis in 2011. However, they seemed to be over 1cm so I decided to make an appointment with my GP.
I have been told that swollen lymph nodes are not a rare phenomenon and there is no reason why I should be worried about them. My GP ordered various blood tests (e.g. CBC with differential, kidney function, liver function, ESR, LDH), all of which came back clear. I also had a chest X-ray which was fine.
I saw a haematologist today and was told that as long as my blood tests such as LDH are fine, there is no reason to be concerned about lymphadenopathy. Hence, I was discharged and been told to come back in 3 months time.
Do you think I should insist on having an ultrasound or FNAB done?
P.S I don't have any chronic conditions apart from TMD and scoliosis which was corrected with spinal fusion.
Thanks in advance for those taking time to respond!
Cheers,
EmptyBroadway
I have been told that swollen lymph nodes are not a rare phenomenon and there is no reason why I should be worried about them. My GP ordered various blood tests (e.g. CBC with differential, kidney function, liver function, ESR, LDH), all of which came back clear. I also had a chest X-ray which was fine.
I saw a haematologist today and was told that as long as my blood tests such as LDH are fine, there is no reason to be concerned about lymphadenopathy. Hence, I was discharged and been told to come back in 3 months time.
Do you think I should insist on having an ultrasound or FNAB done?
P.S I don't have any chronic conditions apart from TMD and scoliosis which was corrected with spinal fusion.
Thanks in advance for those taking time to respond!
Cheers,
EmptyBroadway
Based on the fact that your lymph nodes change in size, as as quickly as they do, that is not how lymphoma works. Lymphoma can cause the nodes to increase in size quickly, however, they would only continue to grow rather than shrink rapidly.
I would be more inclined to believe that you are stressing your body, or that your body has been under a lot of stress which can cause your nodes to respond by changing size. When I was diagnosed with lymphoma, the lymph node on the left side of my neck grew over 2 hours and it looked like I had a golf ball in my neck. I was freaking out. lol... but it went back to normal size in 2 days.
Your LDH levels, CBC, was clear. I would follow their advice and go back in three months, keep tabs on them of course, which I'm sure you are otherwise you wouldn't be posting. :) However, if you don't already incorporate things that help you relax and de-stress, I would recommend adding activities that will help you take your mind off all the things that stress you out, even if its just 15 mins a day.
What does your water intake look like daily? It also sounds like you may have a potassium imbalance if your muscles randomly twitch. That can be easily fixed by ensuring your getting enough electrolytes. Incorporating leafy greens, and banana's can help with that.
I also want to point out that you are well read in your own research regarding lymphoma. I am pointing this out because you are using proper anatomical reference and medical terminology that the average person would not used unless they researched. :)
I would be more inclined to believe that you are stressing your body, or that your body has been under a lot of stress which can cause your nodes to respond by changing size. When I was diagnosed with lymphoma, the lymph node on the left side of my neck grew over 2 hours and it looked like I had a golf ball in my neck. I was freaking out. lol... but it went back to normal size in 2 days.
Your LDH levels, CBC, was clear. I would follow their advice and go back in three months, keep tabs on them of course, which I'm sure you are otherwise you wouldn't be posting. :) However, if you don't already incorporate things that help you relax and de-stress, I would recommend adding activities that will help you take your mind off all the things that stress you out, even if its just 15 mins a day.
What does your water intake look like daily? It also sounds like you may have a potassium imbalance if your muscles randomly twitch. That can be easily fixed by ensuring your getting enough electrolytes. Incorporating leafy greens, and banana's can help with that.
I also want to point out that you are well read in your own research regarding lymphoma. I am pointing this out because you are using proper anatomical reference and medical terminology that the average person would not used unless they researched. :)
COMMUNITY LEADER
'Underweight and PCOS' is also somehow involved in all of this, but I can't put my finger on 'why' at the moment.
COMMUNITY LEADER
"fluctuate in size during the day"
known as "waxing and waning", due to inflammation
"sinusitis"
IMO some people are especially prone to reacting strongly to cytokines and other signalling molecules that leach into serum and so they get generalized immune activation -- so a sinus inflammation can then cause a reactive node to swell more with fluid
"wisdom tooth"
I've heard of cases of occult infection in the jaw, refractory to Abx, which cause lifelong problems but only get proven postmortem. That is rare though.
"as big as a golf ball"
wow, so much fluid from leaking vessels... again from immune cells... and that is probably a very rare extreme reaction. You'll likely notice you are different than average all your life. What about bee stings?
"rash"
again histamine from Mast Cells. Can you draw a line on your sternum with your fingernail? (dermographia)
Do you have bad insomnia?
"CFS"
Chronic Fatigue Syndrome, which I use as an example of what a mystery immune condition can do. In the U.K. you might knew if better as Myalgic Encephalomyeltis (ME), and it's been renamed yet again recently anyway. There are very big controversies in the U.K over CFS that often hit the news.
"mitral valve prolapse (Ehlers Danlos?!)"
yes, or some CTD and it probably doesn't matter which except that the general concept and known associations helps with DDx.
"my joints are making cracking sounds"
Mast Cells have proteases. On the other hand, have you noticed any relation between cracking joints and dehydration?
"muscles are twitching all over the body"
That would take some mulling. What's your guess on that, besides minerals?
"autoimmune"
probably not RA
"ESR"
well, there is rouleaux of RBCs on one hand, but maybe excess heparin (from Mast Cells) on the other. Besides, maybe for you certain of the IL cytokines are more relevant, like IL-6 or IL-10. But then, the famously pro-inflammatory IL-6 becomes anti-inflammatory in its role as a myokine -- so the whole thing is very complex and so getting too involved with molecules and pathways can be fruitless.
Speaking of muscle, do you work out a lot? Lots of running?
"chronic EBV would have caused some kind of organ failure"
Well, I don't think that necessarily so. It can be dormant, with flares. Or very localized, like the throat.
"lyme"
I was going to ask about Lyme, though it's not necessary to explain your symptoms. But since you had the exposure and the rash (even though not bullseye), then it's probably wise to be tested for that plus the usual co-infections. Testing can be inconclusive, btw. Any neuropathies?
As you see, most of this is off the beaten path. So many/most docs would possibly be deaf to this.
known as "waxing and waning", due to inflammation
"sinusitis"
IMO some people are especially prone to reacting strongly to cytokines and other signalling molecules that leach into serum and so they get generalized immune activation -- so a sinus inflammation can then cause a reactive node to swell more with fluid
"wisdom tooth"
I've heard of cases of occult infection in the jaw, refractory to Abx, which cause lifelong problems but only get proven postmortem. That is rare though.
"as big as a golf ball"
wow, so much fluid from leaking vessels... again from immune cells... and that is probably a very rare extreme reaction. You'll likely notice you are different than average all your life. What about bee stings?
"rash"
again histamine from Mast Cells. Can you draw a line on your sternum with your fingernail? (dermographia)
Do you have bad insomnia?
"CFS"
Chronic Fatigue Syndrome, which I use as an example of what a mystery immune condition can do. In the U.K. you might knew if better as Myalgic Encephalomyeltis (ME), and it's been renamed yet again recently anyway. There are very big controversies in the U.K over CFS that often hit the news.
"mitral valve prolapse (Ehlers Danlos?!)"
yes, or some CTD and it probably doesn't matter which except that the general concept and known associations helps with DDx.
"my joints are making cracking sounds"
Mast Cells have proteases. On the other hand, have you noticed any relation between cracking joints and dehydration?
"muscles are twitching all over the body"
That would take some mulling. What's your guess on that, besides minerals?
"autoimmune"
probably not RA
"ESR"
well, there is rouleaux of RBCs on one hand, but maybe excess heparin (from Mast Cells) on the other. Besides, maybe for you certain of the IL cytokines are more relevant, like IL-6 or IL-10. But then, the famously pro-inflammatory IL-6 becomes anti-inflammatory in its role as a myokine -- so the whole thing is very complex and so getting too involved with molecules and pathways can be fruitless.
Speaking of muscle, do you work out a lot? Lots of running?
"chronic EBV would have caused some kind of organ failure"
Well, I don't think that necessarily so. It can be dormant, with flares. Or very localized, like the throat.
"lyme"
I was going to ask about Lyme, though it's not necessary to explain your symptoms. But since you had the exposure and the rash (even though not bullseye), then it's probably wise to be tested for that plus the usual co-infections. Testing can be inconclusive, btw. Any neuropathies?
As you see, most of this is off the beaten path. So many/most docs would possibly be deaf to this.
Thanks a lot for your response!
LYMPH NODE CHARACTERISTICS:
My lymph nodes located in the posterior chain are not stony-hard and both measuring between 1.5-2cm. I would say they are rubbery. The strange thing is that they seem to fluctuate in size during the day. For example, when I had an early morning appointment with haematologist, they were only noticeable in specific positions; a few days ago I had a really bad bout of sinus headache which radiated to the back of my head. That was the point when I felt that my lymph nodes were getting bigger. I wonder if it could be chronic sinusitis because I often hear a strange "clicking" sound coming from my nose.I also have a wisdom tooth which is still growing and might get infected at times. It is actually located on the same same side where the swollen glands appeared.
INFECTIOUS MONONUCLEOSIS:
I think it was easier for me to endure the spinal fusion surgery which took me 4 months to recover rather than infectious mononucleosis. In 2011, I had a lump on the left side of my neck that was as big as a golf ball. I still remember my GP's face when she saw it! I was prescribed antibiotics after which I developed a huge rash on my arm and it took around 3 weeks for the lump to get smaller. At that time I thought it was lymphoma; I was waking up at night to change my pyjama and my neck was so itchy that I wore a scarf at night not to touch it. Ouch!
CFS?
I have TMD, scoliosis, mitral valve prolapse (Ehlers Danlos?!), my joints are making cracking sounds and muscles are twitching all over the body. It could be something autoimmune, but... as long as my ESR is 4, I am not overly concerned about it.
CHRONIC EBV:
My mono was really bad, but it seems like chronic EBV would have caused some kind of organ failure, whilst my bloods seem fine.
THE LAST THOUGHT (finally):
I was also thinking about lyme disease. The place where my parents live is famous for... ticks. Their dog had 5 ticks removed last summer and my mom found one crawling on her skin! A year ago, after visiting my family I noticed a pink blemish on my back. I wonder if it could be a tick bite.
LYMPH NODE CHARACTERISTICS:
My lymph nodes located in the posterior chain are not stony-hard and both measuring between 1.5-2cm. I would say they are rubbery. The strange thing is that they seem to fluctuate in size during the day. For example, when I had an early morning appointment with haematologist, they were only noticeable in specific positions; a few days ago I had a really bad bout of sinus headache which radiated to the back of my head. That was the point when I felt that my lymph nodes were getting bigger. I wonder if it could be chronic sinusitis because I often hear a strange "clicking" sound coming from my nose.I also have a wisdom tooth which is still growing and might get infected at times. It is actually located on the same same side where the swollen glands appeared.
INFECTIOUS MONONUCLEOSIS:
I think it was easier for me to endure the spinal fusion surgery which took me 4 months to recover rather than infectious mononucleosis. In 2011, I had a lump on the left side of my neck that was as big as a golf ball. I still remember my GP's face when she saw it! I was prescribed antibiotics after which I developed a huge rash on my arm and it took around 3 weeks for the lump to get smaller. At that time I thought it was lymphoma; I was waking up at night to change my pyjama and my neck was so itchy that I wore a scarf at night not to touch it. Ouch!
CFS?
I have TMD, scoliosis, mitral valve prolapse (Ehlers Danlos?!), my joints are making cracking sounds and muscles are twitching all over the body. It could be something autoimmune, but... as long as my ESR is 4, I am not overly concerned about it.
CHRONIC EBV:
My mono was really bad, but it seems like chronic EBV would have caused some kind of organ failure, whilst my bloods seem fine.
THE LAST THOUGHT (finally):
I was also thinking about lyme disease. The place where my parents live is famous for... ticks. Their dog had 5 ticks removed last summer and my mom found one crawling on her skin! A year ago, after visiting my family I noticed a pink blemish on my back. I wonder if it could be a tick bite.
COMMUNITY LEADER
Hi.
"Do you think I should insist on having an ultrasound or FNAB done?"
Probably not, and most docs probably wouldn't do it anyway. Especially so without any Fx. But as you know, you'd observe them now and then for size increase. Are they movable?
There's a possible alternate Dx:
"infectious mononucleosis in 2011"
was it extra fierce for you? that's a harbinger, IMO, of overactive immunity
"TMD"
http://www.ncbi.nlm.nih.gov/pubmed/10647761
"Overlapping conditions among patients with chronic fatigue syndrome, fibromyalgia, and temporomandibular disorder."
"scoliosis"
There is also a association with CTDs like Ehlers Danlos and immune dysfunction.
"over a year since I have noticed swollen lymph nodes"
So that'd be an unusual pathogen or else an extra strong response creating fibrosis -- the latter seems more likely because of everything above.
Or maybe chronic Epstein Barr.
"submandibular
red throat/pillars?
P.S. It was very good of you to answer some others' questions while here.
"Do you think I should insist on having an ultrasound or FNAB done?"
Probably not, and most docs probably wouldn't do it anyway. Especially so without any Fx. But as you know, you'd observe them now and then for size increase. Are they movable?
There's a possible alternate Dx:
"infectious mononucleosis in 2011"
was it extra fierce for you? that's a harbinger, IMO, of overactive immunity
"TMD"
http://www.ncbi.nlm.nih.gov/pubmed/10647761
"Overlapping conditions among patients with chronic fatigue syndrome, fibromyalgia, and temporomandibular disorder."
"scoliosis"
There is also a association with CTDs like Ehlers Danlos and immune dysfunction.
"over a year since I have noticed swollen lymph nodes"
So that'd be an unusual pathogen or else an extra strong response creating fibrosis -- the latter seems more likely because of everything above.
Or maybe chronic Epstein Barr.
"submandibular
red throat/pillars?
P.S. It was very good of you to answer some others' questions while here.
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