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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
Hi, you've been suffering a lot, so I'll try to go the extra mile to help.
First off, there's not much reason to suspect a lymphoma.
Does a normal CBC rule out infection? No. Chronic or reactivated Epstein Barr virus wouldn't (and that can also harm the liver, btw). Did you happen to have very severe mono back when?
What is very surprising is that you don't mention any ultrasound results. None were done? That could explain why you are having *severe* node pain, which is not usual.
After this, things are very complicated. There is no easy answer. Each specialist will only see their own specialty. I'll suggest to you that the best way to proceed is to assume that everything has the same root cause - and that includes the back issues (unless the cause there was some accident or other trauma).
First off, there's not much reason to suspect a lymphoma.
Does a normal CBC rule out infection? No. Chronic or reactivated Epstein Barr virus wouldn't (and that can also harm the liver, btw). Did you happen to have very severe mono back when?
What is very surprising is that you don't mention any ultrasound results. None were done? That could explain why you are having *severe* node pain, which is not usual.
After this, things are very complicated. There is no easy answer. Each specialist will only see their own specialty. I'll suggest to you that the best way to proceed is to assume that everything has the same root cause - and that includes the back issues (unless the cause there was some accident or other trauma).
3 Comments
I had mono as a teen. I was Dx'd with Reynaud's in 2019 while on propranolol for hypertension and Maxalt for migraine and being outside in the cold. My fingers turned blue. It happened a few times so Neuro said it was Reynaud's.
No lupus or other autoimmune in my immediate family.
Cardiovascular disease (stroke, heart attack) is prevalent in family hx.
Tested for lyme in 2018. I don't understand the results. The dermatologist said it was negative but here is what Labcorp report shows:
Lyme IgG/IgM Ab 1.04 High
IgG P41 Ab. Present Abnormal
All other bands absent/ negative.
2017 T3 was low and platelets high.
2015-2016 leukocytosis (13k) (neutrophils). No known infection at that time. Hematologist ran several tests including genetic. Started immunotherapy for environmental allergies and WBC came back down by 2017.
I live in the southeastern United States. Tick country. I live in rough conditions in an RV on a friend's property. No laundry facilities so clothing is hung on a line tied between trees. Had scabies in 2018 after visiting a friend in public housing. That resolved.
Bit by bedbugs in 2017 while staying at a hotel after a neuroablation.
There was a car accident in 2010. Some other trauma as well. T6-T12 herniated (T8-T9 6mm impingement on cord). C3-C7 disc bulges with bone spurs. L4-S1 disc bulges with L5-S1 seeming to be near a nerve root although neurosurgeon does not think so. They have been concentrating on SI joint which had been unstable which is why the SI fusion was done in 2017. Surgeon at that time noted that he "relocated a nerve" although I do not know what that means.
Initially I had relief from the shooting pain down my left leg but over time, the pain seemed to migrate lower from the low back to the buttock. The spinal implant was done in 2018. That seemed to offer some relief. I was able to walk without a can for 8 minutes rather than 4. Quite an improvement. I tried to return to part time work but within a few months, sitting became excruciating. It was about this time I noticed the lumps in my left leg. They are in both legs but as the left leg has been the bane of my existence, my thoughts were that the nodes were inflammatory responses to the various surgeries and I didn't notice the ones in the right leg at first.
Then I noticed the nodes in my arms and neck.
My thoughts are that the constant pain from my left buttock to my foot may not necessarily be caused by SI joint disfunction or failed fusion. While my previous injuries already are a source of pain, it may be that this side was just more sensitive to the increased size of the nodes. When the spinal implant if off, the intense shooting pain down my sciatic nerve returns. With it on, this pain is only intermittent.
There is however constant burning, tingling and numbness in my left foot, calf up to the knee. Constant pain in my left thigh and hip. Xrays, MRI and CT have been done thoracic, lumbar spine recently which is why surgeon thinks the damage causing the pain is the failed SI fusion.
No ultrasound has been done yet on the nodes. I have no insurance so getting health care has been a struggle. My disability case was returned unfavorably. I appealed, and have been fighting for years which is why I had to sell my house and move into an RV. I'm waiting for yet another hearing and do have legal representation -- but that's another story.
So my previous GP which was afforded to me by a private charity was not interested in the nodes. He was hesitant to do anything with me due to me being in pain management. He would say that I was "above his pay grade". He has since retired but the new GP is concerned and seems to be interested in helping me. I will no longer have access to the charity care in a few weeks so I'm trying to focus my efforts where it will be most effective.
Sorry for the data dump. I'm just trying to narrow down where to focus. Thank you for your assistance.
No lupus or other autoimmune in my immediate family.
Cardiovascular disease (stroke, heart attack) is prevalent in family hx.
Tested for lyme in 2018. I don't understand the results. The dermatologist said it was negative but here is what Labcorp report shows:
Lyme IgG/IgM Ab 1.04 High
IgG P41 Ab. Present Abnormal
All other bands absent/ negative.
2017 T3 was low and platelets high.
2015-2016 leukocytosis (13k) (neutrophils). No known infection at that time. Hematologist ran several tests including genetic. Started immunotherapy for environmental allergies and WBC came back down by 2017.
I live in the southeastern United States. Tick country. I live in rough conditions in an RV on a friend's property. No laundry facilities so clothing is hung on a line tied between trees. Had scabies in 2018 after visiting a friend in public housing. That resolved.
Bit by bedbugs in 2017 while staying at a hotel after a neuroablation.
There was a car accident in 2010. Some other trauma as well. T6-T12 herniated (T8-T9 6mm impingement on cord). C3-C7 disc bulges with bone spurs. L4-S1 disc bulges with L5-S1 seeming to be near a nerve root although neurosurgeon does not think so. They have been concentrating on SI joint which had been unstable which is why the SI fusion was done in 2017. Surgeon at that time noted that he "relocated a nerve" although I do not know what that means.
Initially I had relief from the shooting pain down my left leg but over time, the pain seemed to migrate lower from the low back to the buttock. The spinal implant was done in 2018. That seemed to offer some relief. I was able to walk without a can for 8 minutes rather than 4. Quite an improvement. I tried to return to part time work but within a few months, sitting became excruciating. It was about this time I noticed the lumps in my left leg. They are in both legs but as the left leg has been the bane of my existence, my thoughts were that the nodes were inflammatory responses to the various surgeries and I didn't notice the ones in the right leg at first.
Then I noticed the nodes in my arms and neck.
My thoughts are that the constant pain from my left buttock to my foot may not necessarily be caused by SI joint disfunction or failed fusion. While my previous injuries already are a source of pain, it may be that this side was just more sensitive to the increased size of the nodes. When the spinal implant if off, the intense shooting pain down my sciatic nerve returns. With it on, this pain is only intermittent.
There is however constant burning, tingling and numbness in my left foot, calf up to the knee. Constant pain in my left thigh and hip. Xrays, MRI and CT have been done thoracic, lumbar spine recently which is why surgeon thinks the damage causing the pain is the failed SI fusion.
No ultrasound has been done yet on the nodes. I have no insurance so getting health care has been a struggle. My disability case was returned unfavorably. I appealed, and have been fighting for years which is why I had to sell my house and move into an RV. I'm waiting for yet another hearing and do have legal representation -- but that's another story.
So my previous GP which was afforded to me by a private charity was not interested in the nodes. He was hesitant to do anything with me due to me being in pain management. He would say that I was "above his pay grade". He has since retired but the new GP is concerned and seems to be interested in helping me. I will no longer have access to the charity care in a few weeks so I'm trying to focus my efforts where it will be most effective.
Sorry for the data dump. I'm just trying to narrow down where to focus. Thank you for your assistance.
*cane, not can. (wish there was an edit option)
EMG, Nerve conduction study done last month were normal. Just tested top of legs to bottom of feet. My left leg is weak but I CAN walk on heels, toes. No foot drop.
Also bone scan done last month. Some increased signal in pelvis, SI region, shoulder, mid spine.
Also bone scan done last month. Some increased signal in pelvis, SI region, shoulder, mid spine.
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