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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
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
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
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
...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
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
"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!
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