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
'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
Can you use your fingernail to write on your sternum? Can you see lines? That's called dermographia. It happens because the mechanical pressure causes MCs to release histamine right there.
1 Comments
This has happened but only occasionally. Under the right circumstances I can just brush against something and a line appears
COMMUNITY LEADER
A capsule is an enclosing membrane of connective tissue. Related to your multiple herniated and bulging discs? Probably. Also to EDS. Did I ask about hyperflexible joints?
Afrin's theory is that MCs shepherd over connective tissue formation, and errant MCs make errant connective tissue. There are some other official "Connective Tissue Disorders" as well.
Afrin's theory is that MCs shepherd over connective tissue formation, and errant MCs make errant connective tissue. There are some other official "Connective Tissue Disorders" as well.
COMMUNITY LEADER
There are two very separate matters for you:
For SSDI, I'd go full out with CFS. You luckily got that Dx, so your next step is to prove severity. Btw, CFS has been renamed to emphasize PEM; so you should, too. But proving MCAS is much harder, mainly because it's newer -- and mixing in MCAS with the CFS Dx would harmfully muddy the waters. Changing docs now might be bad, I'm not sure. SSDI wants clarity, to weed out fakers. Not a hodgepodge.
https://www.cdc.gov/me-cfs/resources/disability.html
https://www.riemerhess.com/wiki/can-get-long-term-disability-benefits-mcas
Next, leaving bureaucracy behind and focusing instead on getting better, forget all that above and focus on MCAS. CFS is just a syndrome, which means it's a bunch of symptoms and we don't understand what it really is or what to do about it. It's also heterogeneous and some guesses are that it is MCAS, or gut dysbiosis, or post viral syndrome, or some chronic mystery virus.
I'd avoid that oblivious doc. Though he's correct that dysbiosys is important, he shouldn't ignore everything else. Expensive herbal brand names? More odd obliviousness, especially for you as an individual. Who says those are better than any others anyway? But yes, I think I had mentioned peppermint to try. Mast cell stabilizer and antimicrobial.
I would definitely gravitate to the woman doc, about MCAS. She might even think that with you as a star patient, she can become the local top expert on MCAS. "MCAS is seen by many docs, but recognized by few."
Here is that great vid with Dr Tina Peers https://www.youtube.com/watch?v=ipLDkDR56Lg
She talks about dealing with unaware docs in her own life.
I think you need to eventually look for an individual doc that is like her in attitude, not for a doc in any particular specialty. From what I've seen, most allergists are only obsessed with skin prick tests. Probably most Rheumys know little about MCAS.
I'd only mentioned IL-1 to show that there are many tests for the many different kinds of inflammation. Testing for IL-1 would not be that helpful for you, though. Or if you found a diamond in the swamp, then maybe I'd think of that expensive inflammtory panel that Dr Bruce Patterson sells. But some have that and it's not a great breakthrough, so it's not like all would be peachy if only you had this or if only that...
Yes, famed Dr Afrin says a lot of his MCAS patients get cracked teeth. You can probably get his book inter-library loan, but it's mostly a litany of patients and their varied symptoms. Or sample it with Look Inside at Amazon. Or websearch for bloggers discussing him.
Spindle cell non encapsulated lipomas tend to have lots of MCs inside. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4530169/
There is such a thing as doctor-created depression. I think I heard that from Dr Donohoe in AU.
"Flushing started during the consult, which I thought was fortunate timing.
Oh yes, but wasted on the blind. Rockets red glare.
Somebody needs to look into any alternative Tx for the painful lipomas. If that exists.
"your body should be making sufficient steroids internally to help you function."
Oh really? Then no one would need an Rx. I hope that's not the trite 'adrenal exhaustion' nonsense. But yes, being anti inflammatory is very much what you need.
"I'd rather not spend money on something that is growing outside."
Correct.
"pain hypersensitivity"
Yes, that's a real thing.
"Mitochondrial Energy Booster"
I don't know if I buy the mitochondria angle. Many have tried ribose, etc., without any benefit. You shoud spend your limited resources on what has the best chance.
"I'm so frustrated."
Yep, and you are one of many. When you have a mystery condition, then stardard medicine doesn't do much for you. They are very good at what they know, but not this.
Teeth problem has nothing to do with cavities.
"New hearing will be scheduled soon..."
If your lawyer didn't start with a Dx of CFS, then what were they planning on saying? I hope it's only 'pay them if you win'.
"what particular combination of symptoms would jar them from CFS?"
You need a standard Dx, not convincing whoever hears your case that you have an unkown but very debilitating illness. They are paper pushers, not mystery solvers. But that's just me guessing.
https://www.disabilitylawfirmnc.com/social-security-disability-for-mast-cell-activation-syndrome/
CFS is nebulous but AFAIK not as new as MCAS. There are pitfalls with MCAS Dx. E.g., the standard is testing for tryptase, but many with actual MCAS show negative on tryptase blood testing. The sample needs to be kept cold by techs, but often isn't. Or the blood is drawn at the wrong time. [In a perfect world, the docs would have taken blood when you were flushing right in their office.]
"If I resort to cold calling from the "yellow pages", would I have more luck under rheumatologist, allergist/immunologist or endocrinologist?"
Maybe here: https://tmsforacure.org/resources/finding-a-physician/
Or do a websearch for--> MCAS doctor in your area.
" mild reaction to contrast dye. It may have been after a CT"
Certainly say that before you get another CT. Often the 2nd or 3rd exposure is much worse in any hypersensitivity reaction.
For SSDI, I'd go full out with CFS. You luckily got that Dx, so your next step is to prove severity. Btw, CFS has been renamed to emphasize PEM; so you should, too. But proving MCAS is much harder, mainly because it's newer -- and mixing in MCAS with the CFS Dx would harmfully muddy the waters. Changing docs now might be bad, I'm not sure. SSDI wants clarity, to weed out fakers. Not a hodgepodge.
https://www.cdc.gov/me-cfs/resources/disability.html
https://www.riemerhess.com/wiki/can-get-long-term-disability-benefits-mcas
Next, leaving bureaucracy behind and focusing instead on getting better, forget all that above and focus on MCAS. CFS is just a syndrome, which means it's a bunch of symptoms and we don't understand what it really is or what to do about it. It's also heterogeneous and some guesses are that it is MCAS, or gut dysbiosis, or post viral syndrome, or some chronic mystery virus.
I'd avoid that oblivious doc. Though he's correct that dysbiosys is important, he shouldn't ignore everything else. Expensive herbal brand names? More odd obliviousness, especially for you as an individual. Who says those are better than any others anyway? But yes, I think I had mentioned peppermint to try. Mast cell stabilizer and antimicrobial.
I would definitely gravitate to the woman doc, about MCAS. She might even think that with you as a star patient, she can become the local top expert on MCAS. "MCAS is seen by many docs, but recognized by few."
Here is that great vid with Dr Tina Peers https://www.youtube.com/watch?v=ipLDkDR56Lg
She talks about dealing with unaware docs in her own life.
I think you need to eventually look for an individual doc that is like her in attitude, not for a doc in any particular specialty. From what I've seen, most allergists are only obsessed with skin prick tests. Probably most Rheumys know little about MCAS.
I'd only mentioned IL-1 to show that there are many tests for the many different kinds of inflammation. Testing for IL-1 would not be that helpful for you, though. Or if you found a diamond in the swamp, then maybe I'd think of that expensive inflammtory panel that Dr Bruce Patterson sells. But some have that and it's not a great breakthrough, so it's not like all would be peachy if only you had this or if only that...
Yes, famed Dr Afrin says a lot of his MCAS patients get cracked teeth. You can probably get his book inter-library loan, but it's mostly a litany of patients and their varied symptoms. Or sample it with Look Inside at Amazon. Or websearch for bloggers discussing him.
Spindle cell non encapsulated lipomas tend to have lots of MCs inside. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4530169/
There is such a thing as doctor-created depression. I think I heard that from Dr Donohoe in AU.
"Flushing started during the consult, which I thought was fortunate timing.
Oh yes, but wasted on the blind. Rockets red glare.
Somebody needs to look into any alternative Tx for the painful lipomas. If that exists.
"your body should be making sufficient steroids internally to help you function."
Oh really? Then no one would need an Rx. I hope that's not the trite 'adrenal exhaustion' nonsense. But yes, being anti inflammatory is very much what you need.
"I'd rather not spend money on something that is growing outside."
Correct.
"pain hypersensitivity"
Yes, that's a real thing.
"Mitochondrial Energy Booster"
I don't know if I buy the mitochondria angle. Many have tried ribose, etc., without any benefit. You shoud spend your limited resources on what has the best chance.
"I'm so frustrated."
Yep, and you are one of many. When you have a mystery condition, then stardard medicine doesn't do much for you. They are very good at what they know, but not this.
Teeth problem has nothing to do with cavities.
"New hearing will be scheduled soon..."
If your lawyer didn't start with a Dx of CFS, then what were they planning on saying? I hope it's only 'pay them if you win'.
"what particular combination of symptoms would jar them from CFS?"
You need a standard Dx, not convincing whoever hears your case that you have an unkown but very debilitating illness. They are paper pushers, not mystery solvers. But that's just me guessing.
https://www.disabilitylawfirmnc.com/social-security-disability-for-mast-cell-activation-syndrome/
CFS is nebulous but AFAIK not as new as MCAS. There are pitfalls with MCAS Dx. E.g., the standard is testing for tryptase, but many with actual MCAS show negative on tryptase blood testing. The sample needs to be kept cold by techs, but often isn't. Or the blood is drawn at the wrong time. [In a perfect world, the docs would have taken blood when you were flushing right in their office.]
"If I resort to cold calling from the "yellow pages", would I have more luck under rheumatologist, allergist/immunologist or endocrinologist?"
Maybe here: https://tmsforacure.org/resources/finding-a-physician/
Or do a websearch for--> MCAS doctor in your area.
" mild reaction to contrast dye. It may have been after a CT"
Certainly say that before you get another CT. Often the 2nd or 3rd exposure is much worse in any hypersensitivity reaction.
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