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Normal CBC, TSH, multiple painful lymph nodes, neck, legs, arms increasing in size
2 years ago, I first brought to the attention of my GP painful lumps mainly in my legs. He didn't examine them (early covid days) but said they were probably lipomas given I already have some at my ankles. At another visit, I insisted he look because the lumps felt different than lipomas and they were getting bigger and more painful. There were some in my arms at that point as well. He was not impressed but noted it in my chart.
GP retired.
Two years later I've lost 12 pounds (10% of my body weight) without trying. Also have hot flashes and night sweats but I'm 53 y/o female and perimenopausal so chalked that up to hormonal changes.
However, in the past month I noticed pain when swallowing. My neck has some tender areas and slight swelling. I'm not sleeping well so I'm tired all the time. Sometimes I wake up sweating. Not much appetite lately. Often light-headed and irritable.
New GP examined the lumps and confirms they do not appear to be lipomas, but lymph nodes and ordered CBC & TSH labs. She also ordered CT of the thyroid since that seems inflamed and tender in some spots.
She said it is most likely infection or thyroiditis but considering weight loss, increased size of lymph nodes over time, etc, she said we need to rule out cancer.
CBC was normal. TSH3/4 also normal.
With a normal blood work I would think that rules out infection, thyroid AND cancer, no?
Or is it possible cancer is still on the table?
CT of thyroid was done but waiting for follow up visit to get results.
Specific areas where nodes are noticeably enlarged and painful are: behind knees running up back of thighs, inner elbows, neck. There are a few areas of increased skin pigmentation that have appeared over the past few years (face, arm, forehead). There appears to be another swollen area (not sure if it is a lymph node) in my abdomen and I've experienced some constipation.
Just 2 months ago I had terrible abdominal cramps, pain, some bleeding. GI doctor suggested diverticulitis although I never had that before. He rx'd antibiotics and a colitis diet of brown rice/potatoes, etc and it seemed to resolve in a few weeks. My typical diet is relatively healthy (mainly organic or home grown vegetables, very little packaged or restaurant food, occasional non-caffeinated soda).
In the past month my ortho rx'd a course of prednisone for pre-existing back pain (failed SI fusion, waiting for treatment plan and possible revision surgery). That did not happen to affect any of the lymph nodes and although in the past steroids have provided relief from back pain/inflammation, this time they only seemed mildly helpful for a day and a half.
There are other painful lumps forming in my legs which do not seem to correspond directly to the lymph nodes, mainly in my calves and thighs. It's terribly painful mostly at night. I can't feel the definitive outline of these as I can the obvious lymph nodes but if pressing hard enough I can feel the lump.
Confused since the lab results seem normal but symptoms are getting progressively worse.
WBC 9.3, RBC 4.67, Hemoglobin 14.1
Platelet count 425, platelet volume 10.6
Neutrophils 6.3/ 67.8%, Lymphocytes 2.2 / 24%, Monocytes 0.5/ 5%,
Eos 0.2/ 1.8%, Basophils 0.1/ 1.2%, Immature granulocytes 0.02/ 0.2%
TSH 0.53 T3 3.82 T4 1.17
For reference, 2019 TSH w/Rflx FT4 was 1.9 (don't know if this is helpful or not)
In 2019 my AST/SGOT was low: 8. This has not been rechecked since (yet, anyway).
In 2020, ANA was normal, CRP 3
I know, these old numbers are pretty useless without updated tests.
Any insight appreciated.
(NOTE: I have multiple herniated and bulging discs. Failed SI fusion. Spinal cord stimulator implant in place since 2018 in case it's relevant)
GP retired.
Two years later I've lost 12 pounds (10% of my body weight) without trying. Also have hot flashes and night sweats but I'm 53 y/o female and perimenopausal so chalked that up to hormonal changes.
However, in the past month I noticed pain when swallowing. My neck has some tender areas and slight swelling. I'm not sleeping well so I'm tired all the time. Sometimes I wake up sweating. Not much appetite lately. Often light-headed and irritable.
New GP examined the lumps and confirms they do not appear to be lipomas, but lymph nodes and ordered CBC & TSH labs. She also ordered CT of the thyroid since that seems inflamed and tender in some spots.
She said it is most likely infection or thyroiditis but considering weight loss, increased size of lymph nodes over time, etc, she said we need to rule out cancer.
CBC was normal. TSH3/4 also normal.
With a normal blood work I would think that rules out infection, thyroid AND cancer, no?
Or is it possible cancer is still on the table?
CT of thyroid was done but waiting for follow up visit to get results.
Specific areas where nodes are noticeably enlarged and painful are: behind knees running up back of thighs, inner elbows, neck. There are a few areas of increased skin pigmentation that have appeared over the past few years (face, arm, forehead). There appears to be another swollen area (not sure if it is a lymph node) in my abdomen and I've experienced some constipation.
Just 2 months ago I had terrible abdominal cramps, pain, some bleeding. GI doctor suggested diverticulitis although I never had that before. He rx'd antibiotics and a colitis diet of brown rice/potatoes, etc and it seemed to resolve in a few weeks. My typical diet is relatively healthy (mainly organic or home grown vegetables, very little packaged or restaurant food, occasional non-caffeinated soda).
In the past month my ortho rx'd a course of prednisone for pre-existing back pain (failed SI fusion, waiting for treatment plan and possible revision surgery). That did not happen to affect any of the lymph nodes and although in the past steroids have provided relief from back pain/inflammation, this time they only seemed mildly helpful for a day and a half.
There are other painful lumps forming in my legs which do not seem to correspond directly to the lymph nodes, mainly in my calves and thighs. It's terribly painful mostly at night. I can't feel the definitive outline of these as I can the obvious lymph nodes but if pressing hard enough I can feel the lump.
Confused since the lab results seem normal but symptoms are getting progressively worse.
WBC 9.3, RBC 4.67, Hemoglobin 14.1
Platelet count 425, platelet volume 10.6
Neutrophils 6.3/ 67.8%, Lymphocytes 2.2 / 24%, Monocytes 0.5/ 5%,
Eos 0.2/ 1.8%, Basophils 0.1/ 1.2%, Immature granulocytes 0.02/ 0.2%
TSH 0.53 T3 3.82 T4 1.17
For reference, 2019 TSH w/Rflx FT4 was 1.9 (don't know if this is helpful or not)
In 2019 my AST/SGOT was low: 8. This has not been rechecked since (yet, anyway).
In 2020, ANA was normal, CRP 3
I know, these old numbers are pretty useless without updated tests.
Any insight appreciated.
(NOTE: I have multiple herniated and bulging discs. Failed SI fusion. Spinal cord stimulator implant in place since 2018 in case it's relevant)
COMMUNITY LEADER
"Sometimes I wake up sweating."
As you know, lymphoma is a cancer of immune cells. The cells are deranged. But while night sweats are a symptom of lymphoma, more normal immune reactions can also produce night sweats because they produce the same signalling biochemicals.
As you know, lymphoma is a cancer of immune cells. The cells are deranged. But while night sweats are a symptom of lymphoma, more normal immune reactions can also produce night sweats because they produce the same signalling biochemicals.
COMMUNITY LEADER
"the pain seemed to migrate lower from the low back to the buttock."
Are you aware of pyriformis syndrome? If that's a possibility for you, you can take measures to avoid aggravating it.
Are you aware of pyriformis syndrome? If that's a possibility for you, you can take measures to avoid aggravating it.
COMMUNITY LEADER
If anybody comes along in the future with a similar situation, I'd suggest the following.
Many of the symptoms might be resulting from very excessive stress, both physical and psychological. Heavy stress can affect the thyroid. It can affect blood pressure, not only from andrenaline and similar, but also from the aldosterone which is secreted by the adrenal glands.
The slight liver problem might be from chronic or reactivated Epstein Barr virus, or from tick borne Babesia, which is a common co-infection of Lyme but can also occur independently.
I'd asked about geo location because the lack of action by the first doc seemed as if this might be in someplace like Costa Rica. But in retrospect, this is a very complex case and so I can't blame the doc for his "above pay grade" comment.
There is an approach called Functional Medicine which seeks to discover *why* the problems are occurring, rather than merely identifying and treating the symptoms separately.
There's also an unusual approach called evolutionary Medicine which would argue that most of these symptoms can be treated with plants, since that's what we evolved with. Maybe true, maybe not.
Many of the symptoms might be resulting from very excessive stress, both physical and psychological. Heavy stress can affect the thyroid. It can affect blood pressure, not only from andrenaline and similar, but also from the aldosterone which is secreted by the adrenal glands.
The slight liver problem might be from chronic or reactivated Epstein Barr virus, or from tick borne Babesia, which is a common co-infection of Lyme but can also occur independently.
I'd asked about geo location because the lack of action by the first doc seemed as if this might be in someplace like Costa Rica. But in retrospect, this is a very complex case and so I can't blame the doc for his "above pay grade" comment.
There is an approach called Functional Medicine which seeks to discover *why* the problems are occurring, rather than merely identifying and treating the symptoms separately.
There's also an unusual approach called evolutionary Medicine which would argue that most of these symptoms can be treated with plants, since that's what we evolved with. Maybe true, maybe not.
COMMUNITY LEADER
I realize that many of the things I might say to you, you already know. But there is one glaring omission in your narrative: you never mentioned 'mast cells'. It's especially glaring because you have anaphylaxis. I could write volumes, but stop me if you already know a lot about them.
I'd regard every doc as a potential threat to you. Because they might unthinkingly prescribe something harmful.
I'd be wary of any prescribed MABs. monoclonal antibodies.
Yes, some docs will unthinkingly regard you as possibly drug seeking. ["For some reason, they seem to get stuck on this --- almost every single Dr."]
I have no doubt that very many suspect you of needing a psychiatrist. That is what so many **wrongly** do when they can't figure out a patient's problems. It is very common in mystery cases. Very common.
There is more than one person I've talked to on this forum over the course of years. So don't think it's any kind of burden.
Yes, everything does come down to your immune system. So I'd say that the goal is to be as anti-inflammatory as possible. We can talk about the ways to try to do that. Self help.
Btw, if the neutrophilia ever returns, I'd most definitely try frankincense (boswellia serrata). It's a 5-LOX inhibitor, which means it inhibits Leukotriene B4, and is probably the only OTC one that exists. LTB4 makes neuts go crazy.
I'd regard every doc as a potential threat to you. Because they might unthinkingly prescribe something harmful.
I'd be wary of any prescribed MABs. monoclonal antibodies.
Yes, some docs will unthinkingly regard you as possibly drug seeking. ["For some reason, they seem to get stuck on this --- almost every single Dr."]
I have no doubt that very many suspect you of needing a psychiatrist. That is what so many **wrongly** do when they can't figure out a patient's problems. It is very common in mystery cases. Very common.
There is more than one person I've talked to on this forum over the course of years. So don't think it's any kind of burden.
Yes, everything does come down to your immune system. So I'd say that the goal is to be as anti-inflammatory as possible. We can talk about the ways to try to do that. Self help.
Btw, if the neutrophilia ever returns, I'd most definitely try frankincense (boswellia serrata). It's a 5-LOX inhibitor, which means it inhibits Leukotriene B4, and is probably the only OTC one that exists. LTB4 makes neuts go crazy.
1 Comments
I've been in Costa Rica twice to do mission work in the jungle. Got terribly ill with giardiasis in 2008. I went back in 2009 and got several fire ant stings. Other than that, no dengue or other hitchhikers that I'm aware of. GP at the time Rx'd plaquenil, for potential malaria even though that isn't common.
COMMUNITY LEADER
Do you ever get unexplained skin flushing?
1 Comments
Yes, often. Like a strawberry. It usually is noticeable on my chest as light scattered redness. Then it becomes more intense and spreads upward to my neck, face, ears. Sometimes stress or just a long conversation does it. Sometimes this is how an allergic reaction begins, such as eating chicken that was breaded in the same vat as fish, which I'm allergic to.
COMMUNITY LEADER
Yes, it's crucial to avoid any position or activity that makes the leg pain worse. Trying to tough your way through it is the worst thing possible, as that only increases the inflammation.
And yes, all your docs are looking for horses but you are the quintessential zebra. Even more so than Ehlers Danlos is. Btw, mast cells might cause EDS and other CTDs.
A hyperactive immune system might be protective against cancer. If the 'killer' cells are hyped up.
I hope you soon get a big lump sum from SSI. Then you can go past mere CRP and test for IL-1. CRP is for acute inflammation. IL-1 and others can be high in *chronic* inflammation. There are worlds within worlds, beyond what you have been tested for.
Auto-inflammatory (zebra) is different than auto-immune (horse).
And yes, all your docs are looking for horses but you are the quintessential zebra. Even more so than Ehlers Danlos is. Btw, mast cells might cause EDS and other CTDs.
A hyperactive immune system might be protective against cancer. If the 'killer' cells are hyped up.
I hope you soon get a big lump sum from SSI. Then you can go past mere CRP and test for IL-1. CRP is for acute inflammation. IL-1 and others can be high in *chronic* inflammation. There are worlds within worlds, beyond what you have been tested for.
Auto-inflammatory (zebra) is different than auto-immune (horse).
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