Aa
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
What would an MCAS specialist prescribe? They can all be OTC in the US:
- an H1 and an H2 blocker
- an MC stabilizer
- come back in 2-6 weeks and we'll see how you're doing
- also a low HST diet
- also avoiding intake of anything that suppresses DAO synthesis, and meanwhile taking vit C and Mg etc that are needed for you to make DAO
- also promoting the *other* enzyme that breaks down HST, but that one works in the blood, not in the gut. That would be anti-insomnia, among other benefits.
fc, you could be the perfect patient with the best chances of stunning improvement. You might end up giving talks to other patients one day, no kidding.
- an H1 and an H2 blocker
- an MC stabilizer
- come back in 2-6 weeks and we'll see how you're doing
- also a low HST diet
- also avoiding intake of anything that suppresses DAO synthesis, and meanwhile taking vit C and Mg etc that are needed for you to make DAO
- also promoting the *other* enzyme that breaks down HST, but that one works in the blood, not in the gut. That would be anti-insomnia, among other benefits.
fc, you could be the perfect patient with the best chances of stunning improvement. You might end up giving talks to other patients one day, no kidding.
COMMUNITY LEADER
Strawberries have fisetin, which for some seems to be a better MC stablizer than quercetin. Powders of either will have much more content than foods, though.
"today... communicate with the resident dr..."
Oh well, I wish I had known that. You won't see this before then. But I'd focus on the dermatographia (aka dermographia) and the flushing episodes, since they are more specific. Yes, MCAS can cause enlarged nodes; but so can a zillion other things. If it was me, I'd de-emphasize all investigations into nodes and/or cancer - since that is just diverting limited resources of docs' time, etc. from the real cause of your problems.
Only after discussing those 2 specifics, I'd next bring up that bad episode you had with the high histamine food - as a way of nailing down the Dx.
You also need an 'authoritative reference'. Here's a recent one, older stuff should be avoided since researchers were stumbling around. E.g., any insistence on serum tryptase testing is possibly harmful, because there are many false negatives (refrigeration is required throughout, but often not done - plus serum levels are not constant anyway).
https://www.degruyter.com/document/doi/10.1515/dx-2020-0005/html?lang=en
'Diagnosis of mast cell activation syndrome: a global “consensus-2”'
The 'first author' Afrin is well known in this field, because of his talks and book. Unfortunately, that's probably not a high impact journal - but better than nothing
"hormones"
Just FYI, many women who are pregnant have their MCAS disappear for the duration. Other women say their CFS disappears - that's likely because their CFS is MCAS.
There's a really apt saying about MCAS patients going to doctors: Many are seen, few are recognized.
"today... communicate with the resident dr..."
Oh well, I wish I had known that. You won't see this before then. But I'd focus on the dermatographia (aka dermographia) and the flushing episodes, since they are more specific. Yes, MCAS can cause enlarged nodes; but so can a zillion other things. If it was me, I'd de-emphasize all investigations into nodes and/or cancer - since that is just diverting limited resources of docs' time, etc. from the real cause of your problems.
Only after discussing those 2 specifics, I'd next bring up that bad episode you had with the high histamine food - as a way of nailing down the Dx.
You also need an 'authoritative reference'. Here's a recent one, older stuff should be avoided since researchers were stumbling around. E.g., any insistence on serum tryptase testing is possibly harmful, because there are many false negatives (refrigeration is required throughout, but often not done - plus serum levels are not constant anyway).
https://www.degruyter.com/document/doi/10.1515/dx-2020-0005/html?lang=en
'Diagnosis of mast cell activation syndrome: a global “consensus-2”'
The 'first author' Afrin is well known in this field, because of his talks and book. Unfortunately, that's probably not a high impact journal - but better than nothing
"hormones"
Just FYI, many women who are pregnant have their MCAS disappear for the duration. Other women say their CFS disappears - that's likely because their CFS is MCAS.
There's a really apt saying about MCAS patients going to doctors: Many are seen, few are recognized.
1 Comments
P R I N T I N G N O W ....... thank you!
I also found this one: https://www.mastcellmaster.com/research.php
I'm a mess. lol Fits and spurts and still in a lot of pain so I type, lay down, return, clear the fog from my brain, then type.
Lather. Rinse. Repeat.
Happy about the berries. Truly. And definitely will try tomatoes and everything. I'm like that. I will just be more deliberate about anything others have found to be troublesome.
I'm on a mission.
I also found this one: https://www.mastcellmaster.com/research.php
I'm a mess. lol Fits and spurts and still in a lot of pain so I type, lay down, return, clear the fog from my brain, then type.
Lather. Rinse. Repeat.
Happy about the berries. Truly. And definitely will try tomatoes and everything. I'm like that. I will just be more deliberate about anything others have found to be troublesome.
I'm on a mission.
COMMUNITY LEADER
It turns out that DAO is very expensive. So here's a possibility: https://healinghistamine.com/blog/dr-joneja-natural-diamine-oxidase-for-histamine-intolerance/
Sprouts raised in the dark. (I've kept this very short since there's no indication of being read.)
Sprouts raised in the dark. (I've kept this very short since there's no indication of being read.)
1 Comments
Excellent. I started sprouting a few years ago and have gotten the hang of with alfalfa so I will try peas and other legumes mentioned.
COMMUNITY LEADER
'There are "phases" I seem to go through, or cycles'
Now we need to be more verbose.
There are times when your baseline level of inflammation is higher. From an allergy season, from a common cold, from stress, from anything that provokes an immune response. In you, that response is exaggerated and at times is self sustaining in a vicious cycle.
Why stress? If you see a bear in the woods, then your chances of being injured, bleeding and needing immune cells goes way up.
Lack of sleep prevents the lowering of inflammation that the body wants to do during sleep.
The gut can be a big, bad source. Esp if lots of Abx were taken in the past, which wiped out good microbes and let bad ones then take over.
So besides avoiding the triggering of acute flares, you also want to lower your overall daily baseline of inflammation.
Time of day influences it, too.
All of that is simplified, of course. But it's like a rain barrel overflowing. If the level is high to begin with, then when a rain comes it overflows more easily.
But it's not all bad, as being high intensity has its own rewards. Lots of them.
=========
Present estimates of MCAS prevalence are ~17% of the population.
There is a large overlap of symptoms between MCAS and long Covid. Also with adverse reactions to the mRNA Covid vaxxes, though that info of course is being mainly ignored and even punished.
Now we need to be more verbose.
There are times when your baseline level of inflammation is higher. From an allergy season, from a common cold, from stress, from anything that provokes an immune response. In you, that response is exaggerated and at times is self sustaining in a vicious cycle.
Why stress? If you see a bear in the woods, then your chances of being injured, bleeding and needing immune cells goes way up.
Lack of sleep prevents the lowering of inflammation that the body wants to do during sleep.
The gut can be a big, bad source. Esp if lots of Abx were taken in the past, which wiped out good microbes and let bad ones then take over.
So besides avoiding the triggering of acute flares, you also want to lower your overall daily baseline of inflammation.
Time of day influences it, too.
All of that is simplified, of course. But it's like a rain barrel overflowing. If the level is high to begin with, then when a rain comes it overflows more easily.
But it's not all bad, as being high intensity has its own rewards. Lots of them.
=========
Present estimates of MCAS prevalence are ~17% of the population.
There is a large overlap of symptoms between MCAS and long Covid. Also with adverse reactions to the mRNA Covid vaxxes, though that info of course is being mainly ignored and even punished.
1 Comments
Ah yes, lots of things are verboten these days. I started out studying chemistry long ago & briefly worked in public health 2009/2010. (If not for unfortunate circumstances I'd be in a lab somewhere.) My stint was during H1N1 so I'm well versed in EUA, the different flavors of fact sheets and contraindications (which have all but disappeared).
Medicine is an art. It is practiced, not performed. We're not Legos. AE may be monitored but should be acknowledged more readily. That might help. It's like finding your 4 yr old smeared with chocolate and covered in crumbs. He denies eating the cookies over and over but you know what you are looking at.
I appreciate the staccato - it's faster. Usual disclaimers acknowledged. My mileage may vary, etc.
"Your MCs might not like having a very full stomach, so eat frequent not large."
Frequent, smaller meals are exactly my forte. I am a grazer so this will work well.
"Forget everything you know about 'healthy eating' for now"
No trouble there. The good thing is we acquired fig trees, apple, peach, mulberry, currant, berry bushes and started perennials like asparagus, artichoke, sunchoke and several beds with herbs so rosemary, fennel, sage, parsley, dill, bergamot, nasturtium, cilantro, lemon balm and more are available. Too bad the strawberries won't do me any good.
I grew tons of peppers last year. Tragically, I do love tomatoes but it seems those will be off the menu. I'll deal with it to feel something resembling normal.
With avocados, it's the oil/ fat. I find that I'm often hungry unless I eat half an avocado every other day or so. I added black beans back to my diet day before yesterday. I hadn't had any since that last GI episode but I tolerated them well. I tried peanut butter today. So far, so good. That usually fills me up like avocados do. Maybe the oil/fat in peanut butter will fill the avocado gap. I always check labels, bordering on obsessively, so I'm sure that I get peanuts/salt and not any concoction with cottonseed or other oils mixed in.
Medicine is an art. It is practiced, not performed. We're not Legos. AE may be monitored but should be acknowledged more readily. That might help. It's like finding your 4 yr old smeared with chocolate and covered in crumbs. He denies eating the cookies over and over but you know what you are looking at.
I appreciate the staccato - it's faster. Usual disclaimers acknowledged. My mileage may vary, etc.
"Your MCs might not like having a very full stomach, so eat frequent not large."
Frequent, smaller meals are exactly my forte. I am a grazer so this will work well.
"Forget everything you know about 'healthy eating' for now"
No trouble there. The good thing is we acquired fig trees, apple, peach, mulberry, currant, berry bushes and started perennials like asparagus, artichoke, sunchoke and several beds with herbs so rosemary, fennel, sage, parsley, dill, bergamot, nasturtium, cilantro, lemon balm and more are available. Too bad the strawberries won't do me any good.
I grew tons of peppers last year. Tragically, I do love tomatoes but it seems those will be off the menu. I'll deal with it to feel something resembling normal.
With avocados, it's the oil/ fat. I find that I'm often hungry unless I eat half an avocado every other day or so. I added black beans back to my diet day before yesterday. I hadn't had any since that last GI episode but I tolerated them well. I tried peanut butter today. So far, so good. That usually fills me up like avocados do. Maybe the oil/fat in peanut butter will fill the avocado gap. I always check labels, bordering on obsessively, so I'm sure that I get peanuts/salt and not any concoction with cottonseed or other oils mixed in.
COMMUNITY LEADER
For dosage of quercetin? Start small and work up. As ever, with anything you try, because you might have a bad reaction to anything.
Oh, and always check with a doctor before you ever do or think anything, blah blah blah... In some countries, they might even make you get a prescription to buy vitamins.
Oh, and always check with a doctor before you ever do or think anything, blah blah blah... In some countries, they might even make you get a prescription to buy vitamins.
COMMUNITY LEADER
Well, comparing your photos to urticaria pigmentosa is equivocal, I guess. Maybe online photos are mainly of severe cases of UP. But keep this in the back of your mind.
How can MCs cause pigmenttion? They have mediators to stir up other cells, like melanocytes. They also can summon cells by using chemokines. Likewise they can summon and stir up fibrocytes, as with your adhesions.
"some narrow lines like a pencil mark"
burrowing mites
"The dermatologist said the discolorations were unrelated to scabies"
That made me LOL :)
How can MCs cause pigmenttion? They have mediators to stir up other cells, like melanocytes. They also can summon cells by using chemokines. Likewise they can summon and stir up fibrocytes, as with your adhesions.
"some narrow lines like a pencil mark"
burrowing mites
"The dermatologist said the discolorations were unrelated to scabies"
That made me LOL :)
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