Strange symptoms: Dr House is baffled
August 9, 2023 10:43 PM Subscribe
I know, YANAD, but after reading so many interesting answers to complicated questions, I figure there’s bound to be some Mefite somewhere with either a similar strange medical history, or esoteric biomedical knowledge, so here goes: Does recurring episodes of pain behind the solar plexus, plus itchy palms, followed by all body hives happening every 6 months signal terminal hypochondria or a weird undiagnosed illness? Details below...
I’m a cancer survivor (Non-Hodgkins Lymphoma, in complete remission since 2007). I was living in the UK then, and hapless NHS “specialists” kept assuring me that my strange symptoms (night sweats, itchy skin, chest tightness) were just ordinary skin rashes with a bit of hypochondria, despite my explaining to them that my Mom died of the same disease and had the same symptoms. Ahem, I digress.
The point is that it paid to be insistent. After the Nth complaint, I was found to be riddled with tumors, rushed to treatment, and ended up completely cured in a few months. I’ve been cancer free since then.
But in the past couple years, I’ve been experiencing a strange new constellation of symptoms:
1. Once or twice a year, I get a sore feeling behind my solar plexus, like there's a sore mass or knot there, about where the aesophagus is.
2. Then my palms start itching.
3. Then a few hours later I usually break out in all body hives.
4. Then after 24 hours all is back to normal for 6 months or longer.
I keep being tested for blood markers as part of post treatment surveillance, and nothing seems out of the ordinary: No tumor markers, inflammation markers, white cells count all normal. X-rays all clear, no visible tumors or masses. The only out of norm indicator is chronic high levels of red blood cells, but Polycythemia was ruled out. I've had my gall bladder removed because of calculus (the calcium kind, not the differential equation kind).
I don't get chronic heartburn, don't have difficulty swallowing, so aesophgitis seems ruled out also.
So: I’ve just gone through the cycle again (solar plexus, palms, intense hives, then all normal). Is it simply an allergic reaction caused by excessive media coverage of orange idiots, or am I suffering from a weird illness?
Dr. House has already ruled out Amyloidisis, but then again he does that in every episode. So what gives? Has anyone else had a similar experience?
I’m a cancer survivor (Non-Hodgkins Lymphoma, in complete remission since 2007). I was living in the UK then, and hapless NHS “specialists” kept assuring me that my strange symptoms (night sweats, itchy skin, chest tightness) were just ordinary skin rashes with a bit of hypochondria, despite my explaining to them that my Mom died of the same disease and had the same symptoms. Ahem, I digress.
The point is that it paid to be insistent. After the Nth complaint, I was found to be riddled with tumors, rushed to treatment, and ended up completely cured in a few months. I’ve been cancer free since then.
But in the past couple years, I’ve been experiencing a strange new constellation of symptoms:
1. Once or twice a year, I get a sore feeling behind my solar plexus, like there's a sore mass or knot there, about where the aesophagus is.
2. Then my palms start itching.
3. Then a few hours later I usually break out in all body hives.
4. Then after 24 hours all is back to normal for 6 months or longer.
I keep being tested for blood markers as part of post treatment surveillance, and nothing seems out of the ordinary: No tumor markers, inflammation markers, white cells count all normal. X-rays all clear, no visible tumors or masses. The only out of norm indicator is chronic high levels of red blood cells, but Polycythemia was ruled out. I've had my gall bladder removed because of calculus (the calcium kind, not the differential equation kind).
I don't get chronic heartburn, don't have difficulty swallowing, so aesophgitis seems ruled out also.
So: I’ve just gone through the cycle again (solar plexus, palms, intense hives, then all normal). Is it simply an allergic reaction caused by excessive media coverage of orange idiots, or am I suffering from a weird illness?
Dr. House has already ruled out Amyloidisis, but then again he does that in every episode. So what gives? Has anyone else had a similar experience?
Ordinarily, I would say that this question would be perfect for CrowdMed, but the site seems to be down at the moment. I hope it's just temporary. CrowdMed is a site where you can enlist the help of "medical detectives" to help you diagnose your mysterious illness. You can read about it here.
posted by alex1965 at 6:33 AM on August 10, 2023 [1 favorite]
posted by alex1965 at 6:33 AM on August 10, 2023 [1 favorite]
Well it's definitely not "hypochondria" because that's an outdated name for illness anxiety. There is no strict split between "real" diseases like cancer and "fake" hypochondria. Those symptoms (and all symptoms that can be verified in any way) are definitely real and physical.
But yes, all three of those physical symptoms at the same time could definitely be triggered by something happening in your environment which causes your body to temporarily shift into a defensive mode. Autoimmune issues like Mast Cell Activation are descriptions of what happens when the body tries to re-establish stability/homeostasis after there is some sort of serious disruption. The same symptoms can be triggered by some physical irritant or a purely psychological threat but the effects are equally real.
My body does things like this fairly often, and my first step is to try to identify the trigger. If there was some clear stressor that seemed to trigger it, then I focus on resolving that and letting my body recover. One time it was definitely triggered by changing my shampoo. You can read a lot of opinions about these kind of symptoms on the internet, but if it's only a problem once every 6 months and you've already ruled out other causes, I would treat it as an occasional autoimmune flare up.
posted by JZig at 7:26 AM on August 10, 2023 [2 favorites]
But yes, all three of those physical symptoms at the same time could definitely be triggered by something happening in your environment which causes your body to temporarily shift into a defensive mode. Autoimmune issues like Mast Cell Activation are descriptions of what happens when the body tries to re-establish stability/homeostasis after there is some sort of serious disruption. The same symptoms can be triggered by some physical irritant or a purely psychological threat but the effects are equally real.
My body does things like this fairly often, and my first step is to try to identify the trigger. If there was some clear stressor that seemed to trigger it, then I focus on resolving that and letting my body recover. One time it was definitely triggered by changing my shampoo. You can read a lot of opinions about these kind of symptoms on the internet, but if it's only a problem once every 6 months and you've already ruled out other causes, I would treat it as an occasional autoimmune flare up.
posted by JZig at 7:26 AM on August 10, 2023 [2 favorites]
Response by poster: Wow! Thank you for these great responses!
Now I have a clear(er) area to investigate, and that's far better than worrying about random causes. It's such a relief.
Dr House is very disappointed that he had to rule out Amyloidisis once again (as required by law), but he says (in a whiny voice with fake American accent): "Interns Iris Gambol, oceano, alex1965, moiraine and JZig are impressive. Next season, let's recruit from Mefi General Hospital".
posted by Bigbootay. Tay! Tay! Blam! Aargh... at 8:37 AM on August 10, 2023 [2 favorites]
Now I have a clear(er) area to investigate, and that's far better than worrying about random causes. It's such a relief.
Dr House is very disappointed that he had to rule out Amyloidisis once again (as required by law), but he says (in a whiny voice with fake American accent): "Interns Iris Gambol, oceano, alex1965, moiraine and JZig are impressive. Next season, let's recruit from Mefi General Hospital".
posted by Bigbootay. Tay! Tay! Blam! Aargh... at 8:37 AM on August 10, 2023 [2 favorites]
I have experienced this for years on and off after I had my ovaries removed. It would sometimes cause fainting and I have been to the ER at least half a dozen times because the symptoms were so intense. I was allergy tested for a bunch of things with no clear results. I was prescribed an Epi pen, which I have never used since breathing issues have not surfaced.
The last time I was at the ER, I was clued into the fact that these histamine reactions begin in the gut. Previously I had been treated with a Benadryl infusion, but this time I was given famotodine (Pepcid AC) and it was remarkable. The last two episodes were essentially cut off at the pass. As soon as I started feeling itchy palms, I took a 40 mg Pepcid AC and the symptoms began to subside in about 20 minutes.
I have never been able to identify the trigger (NSAIDs seem to be a likely culprit) but using this H2 blocker has been life-changing for me.
posted by XtineHutch at 8:47 AM on August 10, 2023 [7 favorites]
The last time I was at the ER, I was clued into the fact that these histamine reactions begin in the gut. Previously I had been treated with a Benadryl infusion, but this time I was given famotodine (Pepcid AC) and it was remarkable. The last two episodes were essentially cut off at the pass. As soon as I started feeling itchy palms, I took a 40 mg Pepcid AC and the symptoms began to subside in about 20 minutes.
I have never been able to identify the trigger (NSAIDs seem to be a likely culprit) but using this H2 blocker has been life-changing for me.
posted by XtineHutch at 8:47 AM on August 10, 2023 [7 favorites]
Response by poster: Interesting, XtineHutch! I am trying Famotodine at the moment in tablet form. Can't say it's working miracles for me yet, but I'm glad it did so for you. Everyone's body reacts differently.
posted by Bigbootay. Tay! Tay! Blam! Aargh... at 1:34 PM on August 10, 2023 [1 favorite]
posted by Bigbootay. Tay! Tay! Blam! Aargh... at 1:34 PM on August 10, 2023 [1 favorite]
Wow. I have experienced similar AND my sister was diagnosed with non-Hodgekin's Lymphoma in her 20's (in remission since 1990). My mom almost died from ignoring the gastro-symptoms and they could only say "her stress caused internal bleeding from ulcers that had eaten holes in her large intestine."
Crazy levels of histamine, itchiness (especially palms and the tops of my thighs and chest), flushing, syncope, low blood pressure, hives, depression/anxiety, chronic rhinitis since I was a kid, sleep apnea, gastrointestinal issues, history of pulmonary infections, so much.
Doctors were stumped. Tilt-table tests, an MRI, a CT Scan, blood tests, etc. Eventually it became manageable for me with an SSRI and thyroid meds, but I still have flare-ups and I do self-medicate with Benadryl.
No one has EVER mentioned mast cells to me. Ever. Everyone has just shrugged and said, "well, we're not sure what is going on."
Not saying I have this but it would explain some things.
posted by jeanmari at 2:41 PM on August 10, 2023
Crazy levels of histamine, itchiness (especially palms and the tops of my thighs and chest), flushing, syncope, low blood pressure, hives, depression/anxiety, chronic rhinitis since I was a kid, sleep apnea, gastrointestinal issues, history of pulmonary infections, so much.
Doctors were stumped. Tilt-table tests, an MRI, a CT Scan, blood tests, etc. Eventually it became manageable for me with an SSRI and thyroid meds, but I still have flare-ups and I do self-medicate with Benadryl.
No one has EVER mentioned mast cells to me. Ever. Everyone has just shrugged and said, "well, we're not sure what is going on."
Not saying I have this but it would explain some things.
posted by jeanmari at 2:41 PM on August 10, 2023
Response by poster: This is becoming surreal. Or we are finding interesting correlations.
That's what great about the Mefi community: No matter how obscure the topic, we find ways to inform and help each other.
I hope this ends up helping you too, jeanmari.
posted by Bigbootay. Tay! Tay! Blam! Aargh... at 3:05 PM on August 10, 2023 [2 favorites]
That's what great about the Mefi community: No matter how obscure the topic, we find ways to inform and help each other.
I hope this ends up helping you too, jeanmari.
posted by Bigbootay. Tay! Tay! Blam! Aargh... at 3:05 PM on August 10, 2023 [2 favorites]
For talking with your doctor about mast-cell activation: tryptase testing, and the timing of this testing:
Total serum mast cell tryptase should be drawn between 30 minutes and two hours after the start of an episode, with baseline level obtained many days later. The urine tests are performed on a 24 hour collection of urine that is started immediately. Since these are not standard laboratory tests, patients should work with their local allergist who can communicate with emergency and lab personnel to assure they are ordered and completed in a timely fashion.
posted by Iris Gambol at 3:32 PM on August 10, 2023
Total serum mast cell tryptase should be drawn between 30 minutes and two hours after the start of an episode, with baseline level obtained many days later. The urine tests are performed on a 24 hour collection of urine that is started immediately. Since these are not standard laboratory tests, patients should work with their local allergist who can communicate with emergency and lab personnel to assure they are ordered and completed in a timely fashion.
posted by Iris Gambol at 3:32 PM on August 10, 2023
I hope you can find some answers. My only palms/soles of my feet itching were an allergy to the meds I had just taken. And I get hives from any NSAID type thing I take. It was crazy weird. But your things certainly seem to be an allergic reaction to something, internal or external.
And, Dr. House would also say it's not Lupus...
But they always get it wrong three or four times before they get it right.
Damn I am sad that I have watched all of House, and there is no more to watch.
I have to have a net implanted in my heart for a surgery next month, through my Jugular Vein, yikes. When I was a teen, that's how you killed your enemies, slit their Jugular Vein!!!
said to my surgeon, "I've watched enough House to know that's when I crash". He assured me that House is not real. Totally didn't get the joke.
Good luck!
posted by Windopaene at 4:43 PM on August 10, 2023
And, Dr. House would also say it's not Lupus...
But they always get it wrong three or four times before they get it right.
Damn I am sad that I have watched all of House, and there is no more to watch.
I have to have a net implanted in my heart for a surgery next month, through my Jugular Vein, yikes. When I was a teen, that's how you killed your enemies, slit their Jugular Vein!!!
said to my surgeon, "I've watched enough House to know that's when I crash". He assured me that House is not real. Totally didn't get the joke.
Good luck!
posted by Windopaene at 4:43 PM on August 10, 2023
Response by poster: Good luck to you too!
When I was getting chemo, I had to have a port implanted in my chest so I wouldn't have to be stuck with a syringe every time. It also went through a vein. It sounded scary, but in the end it was no problem at all! You just get anesthesia, the ceiling starts spinning, you count 10, 9.....zzzzzzz and you wake up a brand new cyborg. I hope yours goes as smooth as mine did. The only serious side effect is that you may start talking nonsense as you wake up. I kept telling my wife "you're sooooo pretty....." over and over again. I can still make her laugh by pretending to go under again.
posted by Bigbootay. Tay! Tay! Blam! Aargh... at 6:30 PM on August 10, 2023
When I was getting chemo, I had to have a port implanted in my chest so I wouldn't have to be stuck with a syringe every time. It also went through a vein. It sounded scary, but in the end it was no problem at all! You just get anesthesia, the ceiling starts spinning, you count 10, 9.....zzzzzzz and you wake up a brand new cyborg. I hope yours goes as smooth as mine did. The only serious side effect is that you may start talking nonsense as you wake up. I kept telling my wife "you're sooooo pretty....." over and over again. I can still make her laugh by pretending to go under again.
posted by Bigbootay. Tay! Tay! Blam! Aargh... at 6:30 PM on August 10, 2023
Yeah I love sedation...
Make me NOT remember anything about this is my motto.
I have the major surgery scheduled for a couple days later, which is probably a bigger deal, but.
Keep focusing on the jugular vein as about the worst thing I can imagine...
I hope you can figure this out. Our bodies are just so weird.
EDIT: And in a month, I hope to be not a cyborg.
posted by Windopaene at 9:14 PM on August 10, 2023
Make me NOT remember anything about this is my motto.
I have the major surgery scheduled for a couple days later, which is probably a bigger deal, but.
Keep focusing on the jugular vein as about the worst thing I can imagine...
I hope you can figure this out. Our bodies are just so weird.
EDIT: And in a month, I hope to be not a cyborg.
posted by Windopaene at 9:14 PM on August 10, 2023
Response by poster: All the best to you, Windopaene!
posted by Bigbootay. Tay! Tay! Blam! Aargh... at 9:39 PM on August 10, 2023 [1 favorite]
posted by Bigbootay. Tay! Tay! Blam! Aargh... at 9:39 PM on August 10, 2023 [1 favorite]
By the way, CrowdMed is back online. They've racked-up some impressive results over the years. You can listen to a podcast about it. A photographer developed some weird neurological problems that baffled her doctors and caused her grief. She posted her info on CrowdMed, and the medical detectives correctly diagnosed her issue.
posted by alex1965 at 7:01 AM on August 17, 2023
posted by alex1965 at 7:01 AM on August 17, 2023
This is an old post, but I still wanted to respond to this comment from XtineHutch: "I was prescribed an Epi pen, which I have never used since breathing issues have not surfaced."
In case it's useful for anyone else in the future, here is what my allergist told me years ago when I was first diagnosed with many allergies, and again later when she was gently chiding me for not using my epi in an incident when I should have--you can have an allergic response in any system in your body, and you should use your epi pen when you have breathing issues/throat closing or when you have other symptoms in any two body systems. So for example, nausea or other digestive complaint + hives, itchiness + wheezing, drop in blood pressure + hives, tachycardia + flushing, cramps + dizziness, etc. Sometimes you can get mental confusion or anxiety (sometimes called "an impending sense of doom," which I've experienced and did not enjoy).
Of course, other illnesses can cause that kind of combination of symptoms, but if you have reason to think it might be related to an allergic reaction, you should not wait until you cannot breathe to use the epinephrine.
I have lost track of the number of people I've encountered who have had enough issues with allergies to have an epi pen but whose doctors have not told them about when they need to use it. (That and the fact that you need to rinse out your mouth after you use your inhaler or you might get thrush. I don't know why doctors don't tell people that)
posted by JR06 at 6:59 AM on August 30, 2023
In case it's useful for anyone else in the future, here is what my allergist told me years ago when I was first diagnosed with many allergies, and again later when she was gently chiding me for not using my epi in an incident when I should have--you can have an allergic response in any system in your body, and you should use your epi pen when you have breathing issues/throat closing or when you have other symptoms in any two body systems. So for example, nausea or other digestive complaint + hives, itchiness + wheezing, drop in blood pressure + hives, tachycardia + flushing, cramps + dizziness, etc. Sometimes you can get mental confusion or anxiety (sometimes called "an impending sense of doom," which I've experienced and did not enjoy).
Of course, other illnesses can cause that kind of combination of symptoms, but if you have reason to think it might be related to an allergic reaction, you should not wait until you cannot breathe to use the epinephrine.
I have lost track of the number of people I've encountered who have had enough issues with allergies to have an epi pen but whose doctors have not told them about when they need to use it. (That and the fact that you need to rinse out your mouth after you use your inhaler or you might get thrush. I don't know why doctors don't tell people that)
posted by JR06 at 6:59 AM on August 30, 2023
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posted by Iris Gambol at 11:25 PM on August 9, 2023 [3 favorites]