Hi Isadora, if you like you can post the ultrasound report here and I'll explain what it says. It is your legal right to have that report. I'm sure it contains no reason to worry about cancer.
The surgeon is wrong in implying that length alone can point to cancer. However, if you really really really want the biopsy, then go along with the surgeon. That might give you some peace of mind, when the biopsy comes back negative.
The rude doc is correct in that a node which is 2.2cm x 1cm is not-cancer. That shape, long and thin, points to not-cancer. The absolute length cannot point to cancer, but it does point out that something (inflammatory) is amiss.
Dwelling on cancer distracts from finding the *real* cause, which is almost certainly inflammatory.
Hi, Isadora. I believe your analysis. That's assuming that the specks are indeed blood, for certain.
You can websearch for--> psychological factors cystitis
E.g.--> https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040587/
[Psychosocial co-morbidities in Interstitial Cystitis...
]
"Evidence suggests psychosocial factors, such as comorbid anxiety, depression, quality of life... accompany and intensify the illness."
That's not directly talking about bleeding. but it does say that emotions/anxiety can affect the bladder.
We know that emotions/anxiety affect the immune system. Can immune system chemicals cause bleeding? Do ducks float? Yes. The same immune cells that produce histamine also produce heparin, the famous blood thinner -- and too much blood thinning causes bleeding -- especially in mucous membranes.
It is very common that people with hyperactive immune systems and mystery problems get sent to psychiatrists. Still, relaxation can help.
Is the bleeding serious? My *guess* is 'no'. It's not good, but it's all that bad either. Just make sure you're not also bleeding in the GI tract. Vitamin K might help to prevent bleeding, it's used in making the clotting factors in the liver.
Your self observations and analysis are great assets for you, Isadora.
"What do you think? Should I be scared out of my mind"
Nope, you should not be.
But let's take a little side excursion. Some people just can't stop their mind from going to the worst, and especially when it comes to cancer. It's not like you are deliberately *choosing* to think that. And guess what? Being high in histamine levels can lead to anxiety. So that part of it is biochemical, it's not purely psychological.
Isadora, can you maybe do the following: when the bad thoughts come, can you step back and recognize that they are not logical? It'd be sort of like weathering a storm. Your upper mind knows the storm won't wash you away, but your lower mind still has the fear and you still have to live through it. It will eventually subside, and sure it will come again and then you just weather through it again.
Or maybe think of it like watching a horror movie. You feel the fear but you know it's not real, it's a movie.
That's a thought anyway.
Your Claritin is a 'non-sedating' anit-histamine. Maybe you would do better on good old Benadryl, which can be calming.
And no, a node wouldn't be shallow and flat. Maybe it's not really something that's there, or maybe it's just a lipoma (which is not-cancer).
Btw, that muscle is the sternocleidomastoid. Maybe you can distract yourself from the worry by saying that fast 20 times :)
Have you been doing the low histamine recipes? Everything you have heard or believe about 'healthy eating' should be put aside for the short term. E.g., having avocados and spinach are bad because they are high histamine.
I would try the DAO capsules before every meal. Some people feel much better in a matter of days.
How's the fasting going?
"As long as I don't eat I don't feel terribly hungry."
When fasting, after a while the beta Hydroxybutyrate BHB, a 'keytone body') that gets produced takes away hunger. That's one big reason that some people do the ketogenic dieting.
In ancient times, people used fasting as an anti-seizure remedy - as in epilepsy.
Fasting is also anti-inflammatory. So run with it :)
You don't need an ultrasound to check for cancer.
But as to, "Sometimes I just fast and fast because I feel so much better somehow when I don't eat anything (is that an indicator of anything?)"
Yes, you should go with that as a regular part of life from now on. Its likely dopamine (the 'seeking' hormone) that wants you to be active. Plus, you're not taking anything in that harms you, so it's also like a purification. I think you're very lucky that you get that effect from fasting, rather than feeling ill. Very lucky.
I get the same way when I don't eat, and I'm not overweight. It's like being "on", like a wolf loping across the northern plains in the moonlight on an empty stomach.
But you should be sure to take in necessary nutrients over the long term. That's really outside my field, though. However, being low histamine should come first. And don't consume things that reduce your naturally produced DAO, such as alcohol.
Yep, you're lucky you get that feeling.
The complexity is almost endless:
"Grilled seafood had higher histamine levels than raw or boiled seafood. For meat, grilling increased the histamine level, whereas boiling decreased it. For eggs, there was not much difference in histamine level according to cooking method. Fried vegetables had higher histamine levels than raw vegetables. And fermented foods didn't show much difference in histamine level after being boiled."
Was your salmon grilled?
So here's an idea: how about looking up--> low histamine recipes
I'm not versed in the histamine-foods angle, so maybe we'll both learn at the same time. It might help by understanding *why* some foods have high levels, and for some it's because of bacteria in the food that's manufacturing histamine. E.g., fish that is super fresh probably has little - but if it's been sitting then it had time to make histamine inside. The peas are naturally high, as are all legumes, IIRC.
Let me know along the way what you learn from your own experience. Reading on websites is just a way to direct your own investigations. You have a very well ordered mind, so that's a big asset to you in this :)
Another lesson learned here might be that you react very strongly to consuming histamine, and that might explain the painful nodes in your legs. So lucky you, you had a meal which made you feel bad :) It's lucky in that it provided a big clue. Serendipity.
----------
Btw, histamine is broken down in the gut by an enzyme called DAO. Some people buy that to take with meals.
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Not having urticaria pigmentosa tends a lot to say that you don't have the worse kind of MC disorder called mastocytosis. So that's good.
The small patch of brown that you have might very well be melanin pigmentation that was created when something made MCs right there go amok and stimulate the melanocytes to make too much melanin.
Isadora, you really really have to become expert in the histamine content of foods. Websearch for --> histamine peas
and then for salmon. Check more than one site because they can disagree.
Then we'd have to wonder about how soon is the onset of action:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7463562/
Histamine Intolerance: The Current State of the Art 2020
"20–30 min post-ingestion"
-------
Yes, that's a good insight you had about how the anti-histamine med can possibly reduce the severity of dermographia.
Here's another sign to check in pictures: urticaria pigmentosa brown spots/patches
Let me know for sure if you have that or not. It's important.
It's called dermatographia, lines from excessive histamine
-------------
Try this youtube: "Is Histamine Intolerance The Cause Of Your Mysterious Symptoms"
"started getting symptoms of MG at 84, around Nov 2018 which I'm told is very odd because most people who have it get diagnosed in their 30s or so."
Let's keep in mind that it might be a misdiagnosis then.
"having bouts of nausea followed by a sick overall sensation, like a malaise... Not sure what that was at all."
Probably MCs were stirred up. Same for heat sensitivity and most everything else -- except those due to obesity. PLUS the nerve thing which needs further exploring.
"flushing... Kind of like having a "flare" ... hot sensation and break out in a light sweat... my face will be red for no reason but doesn't feel hot."
The reason is MCs and histamine, PGD2 etc.
Can you write on your sternum with your fingernail? How bad and persistent?
"Can hardly breathe in the heat..."
MCs and their leukotrienes and histamine.
"hiatial hernia and history of significant reflux"
overweight
"tons of bladder issues"
'sterile inflammation' from MCs
blood in urine? Not sure, but MCs make heparin. Ever have easy bruising? <-- needs answer
MCs have over 100 inputs (receptors) and make maybe over 300 biochemicals (mediators).
"I struggle to get my iron to normal levels."
You probably have mineral absorption problems because your duodenum is damaged... by MCs. Take vit C with iron to try to improve absorption.
"though 3rd time my arm was sore for about 4 or 5 days which was odd since the others were about a day or day and a half)"
The immune system learns, then can suddenly act like a hurricane on subsequent exposures. Especially for Type 1 Sensitivities (IgE on MCs). People who one day died from a peanut probably felt no problem from the first peanut exposures.
It's about odds. Imagine somebody who says that they once played Russian Roulette with no problem, and therefore it's completely safe.
"third shot also did something where two days after I woke up at 2 am with my heart racing at 155 BPM"
That would scare me. You need a home BP monitor to see if BP also skyrockets. And look up figures for medical urgency and medical emergency, for BP. If your vision gets swimmy/piecey (tiny retina vessels), that's possibly a med emergency. Go to ER. And btw, kidneys also have tiny vessels. And a bleeding stroke is more rare than blockage strokes, but is much more deadly.
Or maybe your BP went very low that night and so you had reflex tachycardia. Not so worrying.
ERs are not good at all for solving mysteries, though. That's not their field.
"When I was in my early 20s I suddenly out of nowhere got pain and swelling in all of my joints, it even seemed like nodules were on my wrists."
Before or after mom's MG?
"I went to an orthopedic guy and he took x rays and did some TENS unit therapy."
That was the usual approach of treating symptoms. We want to find cause(s).
"Oh this does wonders for my over active brain, which of course goes straight to the idea of cancer since it's bigger than 1 cm."
Nope, that's plainly wrong. Merely looking at that one dimension is very wrong.
"gut infection" Any infection or vaccine can stir up the immune system. Any allergy likewise -- if you spent a week in the desert, you might improve just because of being away from humidity and molds and pollens.
Body fat is pro inflammatory. Exercise makes muscle produce anti-inflammatory biochemicals.
"hyper flexible" --> Ehler's Danlos Syndrome, which is highly associated with all of this, as is CFS & Fibromyalgia and so on.
Some docs say that immune cells called "mast cells" (remember their name forever) might cause EDS. The MCs also produce histamine and other inflammatory biochemicals like prostaglandins and leukotrienes. I'm trying to not use too much jargon, but some is necessary. A necessary--> MCAS which is Mast Cell Activation Syndrome.
"When I had chicken pox at 13 it affected my CNS and I could hardly stand up at all, my back was intensely weak and affected."
Wow, that's super important. That was before your mom had MG symptoms? This is the one topic that still needs thrashing out. We have to separate real neuromuscular symptoms from mimicking, just as we separated real pain from imaginary or over-exaggerated pain.
"I was always curious why it hit me so hard like that."
Me, too. We need to find that out.
Maybe later today I'll websearch:
chicken pox nerve sequelae
chicken pox chronic complications
chicken pox post viral syndrome
"I will reread probably ten times"
That's perfect :)
"But you're here now and I feel there is hope!"
Let's make this successful. Then we'll both be justly proud, okay?
Here is the grand overview: your immune system is doing this. You have the genetic predisposition, plus the physical life factors and emotional experiences to exacerbate things tremendously. Realizing this is, I'd say, easy. But reversing things will be arduous. If you dedicate yourself and work ultra hard to understand and overcome this, it will be a magnificent victory.
"if it's the surrounding area that hurts"
That's medically possible, just as any swelling caused by injury or inflammation or otherwise can hurt.
"Could a cancer cause a node to cause referred pain without actually hurting itself?"
If it's big enough to press on something,, esp if sensitized.
"spontaneous zing"
Sounds like something pressing on a nerve.
"I had an infection in my gut for about 12 days"
That introduces the whole other huge topic, very relevant, of how gut dysbiosis can elevate systemic inflammation.
"Is it very unlikely a cancer would cause this kind of pain that can lasts days/weeks then disappear again for days/weeks over such a long time?"
Very, very unlikely. How can a body's immune system wipe out a cancer, then let it soon grow again? Back and forth repeatedly. But not-cancer inflammation can readily do that.
"after standing"
Usually blood pressure goes down upon standing (orthostatic hypotension) in immune system cases. So it's unusual to go up. Btw, are you hyper flexible? <-- make sure to answer that
"when re-reading"
Wow, that's excellent that you read it through more than once :) Bravo.
"(I can't tell you how much I've cried over it and spent a month basically sleeping and crying after she passed away.)"
I think that devotion is admirable, but it's got to stop along with the stress and tension and guilt. Your system can't physically take it.
"I wonder sometimes if her illness and hospitalization somehow triggered something in me."
Yes, one's immune system can be changed. The immune cells change (e.g., they 'express more receptors').
"We were always very close and I would mimic her symptoms sometimes and I'm very suggestible."
Okay, I was very much going to ask you if your MG-like symptoms might be psychosomatic. I figured I'd wait a day, when you'd realize that I was not being mindlessly critical of you :)
It's good that you are very honest. Btw, some of your docs will inevitably think you are making things up, they usually refer to a shrink in mystery immune cases.
"This makes me sound crazy"
People with highly active immune systems are often also subject to high anxiety. You're not 'crazy'. Some of your docs think you are - that is common because some of their patients are. But not you. Oh, and NEVER EVER EVER let them think you want opioids. Which you don't, but always tell them that you don't.
"I know I'm not imagining my pain"
Yep, that's why I'd mentioned about physical reasons that such a thing exists physiologically. But you probably can't convince most docs. Doctors are great at handling the things they know how to handle. They are not great at handling mystery cases.
"or the 1.6 cm lymph node"
Yes, bingo. Hard evidence. But the 1.6mm does not tend toward cancer. If you post the ultrasound report, we can go over that.
What we want is to use your analytical mind to obsessively get at what the real cause is, and not get endlessly sidetracked into thinking of cancer. You should not listen to anybody who says to just stop worrying and forget about everything - that's just dumb :) You want your long suffering to end, not be just disregarded.
"Sorry I keep writing novels"
Oh, that's exactly what is required. To understand and make it all make sense together.
"if it's the surrounding area that hurts"
That's medically possible, just as any swelling caused by injury or inflammation or otherwise can hurt.
"Could a cancer cause a node to cause referred pain without actually hurting itself?"
If it's big enough to press on something,, esp if sensitized.
"spontaneous zing"
Sounds like something pressing on a nerve.
"I had an infection in my gut for about 12 days"
That introduces the whole other huge topic, very relevant, of how gut dysbiosis can elevate systemic inflammation.
"Is it very unlikely a cancer would cause this kind of pain that can lasts days/weeks then disappear again for days/weeks over such a long time?"
Very, very unlikely. How can a body's immune system wipe out a cancer, then let it soon grow again? Back and forth repeatedly. But not-cancer inflammation can readily do that.
"after standing"
Usually blood pressure goes down upon standing (orthostatic hypotension) in immune system cases. So it's unusual to go up. Btw, are you hyper flexible? <-- make sure to answer that
"when re-reading"
Wow, that's excellent that you read it through more than once :) Bravo.
"(I can't tell you how much I've cried over it and spent a month basically sleeping and crying after she passed away.)"
I think that devotion is admirable, but it's got to stop along with the stress and tension and guilt. Your system can't physically take it.
"I wonder sometimes if her illness and hospitalization somehow triggered something in me."
Yes, one's immune system can be changed. The immune cells change (e.g., they 'express more receptors').
"We were always very close and I would mimic her symptoms sometimes and I'm very suggestible."
Okay, I was very much going to ask you if your MG-like symptoms might be psychosomatic. I figured I'd wait a day, when you'd realize that I was not being mindlessly critical of you :)
It's good that you are very honest. Btw, some of your docs will inevitably think you are making things up, they usually refer to a shrink in mystery immune cases.
"This makes me sound crazy"
People with highly active immune systems are often also subject to high anxiety. You're not 'crazy'. Some of your docs think you are - that is common because some of their patients are. But not you. Oh, and NEVER EVER EVER let them think you want opioids. Which you don't, but always tell them that you don't.
"I know I'm not imagining my pain"
Yep, that's why I'd mentioned about physical reasons that such a thing exists physiologically. But you probably can't convince most docs. Doctors are great at handling the things they know how to handle. They are not great at handling mystery cases.
"or the 1.6 cm lymph node"
Yes, bingo. Hard evidence. But the 1.6mm does not tend toward cancer. If you post the ultrasound report, we can go over that.
What we want is to use your analytical mind to obsessively get at what the real cause is, and not get endlessly sidetracked into thinking of cancer. You should not listen to anybody who says to just stop worrying and forget about everything - that's just dumb :) You want your long suffering to end, not be just disregarded.
"Sorry I keep writing novels"
Oh, that's exactly what is required. To understand and make it all make sense together.
Hi, Isadora.
1) No, there's no reason to think of cancer here.
2) Yes, there is every reason to think of a mystery immune condition.
Cancerous nodes rarely feel painful. But reactive nodes (that's when the immune system is reacting to some real or imaginary invader) do feel pain, from the swelling they undergo. Cancerous nodes don't go up and down - imagine if they can stop having cancer inside, back and forth repeatedly -- that would be almost miraculous. But reactive nodes do go up and down, that's normal for them. Something is setting them off.
The immune biochemical histamine seems very much involved. It causes swelling. It also is the main cause of *itching*. What about skin flushing? Insomnia? Bad reactions to mold, perfume, or bee stings?
Claritin helped because it is an antihistamine. So is regular Benadryl/diphenhydramine. Try that as a topical creme when itching strikes.
Some people are extra sensitive to pain caused by immune biochemicals like 'Substance P' and bradykinin. It's surprising but true that contestants on shows like Biggest Loser actually *do* feel more pain, they're not just being whiners :)
I'm sure you understand that weight loss is essential here. And it's much better than some pill a doc might give, if there even is one. It's better to remove the overall cause than to merely treat the symptoms individually.
"I have been also experiencing a more severe itch in my hands and bottom of my feet the past two weeks out of nowhere and Claritin takes it away. Very strange."
Touching anything? Going barefoot? Yep, palms and soles would be very unusual, unless it's from contact.
"I am concerned about the pain being in multiple regions..."
Let's look at it as generalized inflammation, with flareups. Not cancer.
So then, what are the triggers? Are you aware that certain foods contain histamine? Let's start with that as a possible trigger. Please study a list of histamine foods, some are surprising. Then there are sensitivities to oxylates, salicylates, etc.
Stress also raises overall inflammation.
"doctors who don't seem to take it seriously"
Because they don't know what to do, and this doesn't seem life threatening. It is very common for people with mystery immune conditions to go *years* without answers. Very common.
"If it isn't cancer, what IS it? Fibromyalgia? MS? CFS? A low grade systemic inflammation?"
Yes :) All are officially mysteries, btw.
"I have been having a mild pain in my neck on left side"
Probably too much bed time.
We need to get you up and about while you still can. Without a drill sergeant at hand, we have to find some lure to it for you.
"fasciculations"
We can get to that tomorrow, because that's important. False negative test results maybe?
"I feel like I'm losing my mind."
Hang in there :) We can make some good progress.
Sorry for the delay, Isadora. I've had a string of problems.
"[the nodes] are just big for some reason. He didn't help me on the journey of finding out why but there's that."
Most likely they are being chronically stimulated by some pro inflammatory molecules.
"I had been having a bad taste in my mouth..."
Okay then, there's some infection in the nearby tissue which can explain the pro inflammatory molecules floating around; floating both in the nearby tissue [for the stone/lith/calcification] and then also leeching into blood circulation [and ending up in the auxiliary and inguinal nodes].
"...when I yawn for the past 8 weeks and he said he doesn't thinkg it would come from that since it isn't oozing or leaking and is covered like by a membrane of tissue but I am thinking it has to be that."
Wel yes, they're most likely related. Prolly though the site of occult tissue infection that causes the bad taste is also stimulating the growth of the lith. Immune cells can tell osteoblasts what to do.
That lith might really be from calcified granuloma. Not that it matters that much.
"I figure there's nothing that can help them but is it safe to get contrast?"
I wouldn't. Besides, I don't think there's much reason to want the scan amyway. What's the purpose, aside just for fishing around. And I agree about the radiation.
"...couple bouts of inguinal pain and a few armpit pain but overall it is like the once many times daily on/off pain has reduced by a good 85% and I don't even know why"
Likely because:
(1) there is at the moment less of systemic inflammation, therefor less of inflammatory molecules around, like Substance P and bradykinin
(2) any subsequent reduction of swelling means less pressing from inside
But still, we don't know why you have less systemic inflammation now. That would be very useful to figure out.
SUMMARY: as ever, you have hyperactive inflammation. The lith is just another sequela.