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BRIGHT RED FLUSHING- please help!
Please help- I am desperate. I have been trying to get diagnosed for over 2 years now, and I am at my wits' end. I am a 26 year old caucasian female. Here is my story:
I have been flushing BRIGHT RED almost all the time now. It happens for no reason, and I feel ridiculously HOT. My face, neck, chest, sometimes arms & knees turn mottled bright red, while the tip of my nose, fingers and toes freeze. I sweat more than normal now, I get random little white ulcers in my mouth almost constantly. I have random skin rashes and itchiness that my dermatologist can't solve. I have been diagnosed with a primary liver tumor. The original diagnosis was that of a benign focal nodular hyperplasia. However, the doctor just called with the results of my 6-month CT scan, and it's growing rather rapidly (which FNHs don't do). A liver biopsy WAS done before (with CT guidance), but the pathologist had a hard time on diagnosis and actually sent it to specialists at Johns Hopkins Hospital for a 2nd opinion. They now believe that the FNH diagnosis was wrong, but still can't tell me what it is. I'm currently scheduled for another biopsy and possibly resection. The doctors can't link my flushing to the tumor though. I just don't see how it's possibly anything else. My hair (on my head) has been falling out now, and just this week, I am now seeing little flashing lights when I close my eyes, for just a few seconds. My doctor's quickness in calling me about these results (the CT was just done a day and a half ago), the fact that it's growing, the concept that some of the best doctors on the East Coast have no idea what is going on with me, and these new symptoms have me SCARED OUT OF MY MIND. Does anyone have ANY ideas?!? I'm open to any suggestions! Thank you!!!
I have been flushing BRIGHT RED almost all the time now. It happens for no reason, and I feel ridiculously HOT. My face, neck, chest, sometimes arms & knees turn mottled bright red, while the tip of my nose, fingers and toes freeze. I sweat more than normal now, I get random little white ulcers in my mouth almost constantly. I have random skin rashes and itchiness that my dermatologist can't solve. I have been diagnosed with a primary liver tumor. The original diagnosis was that of a benign focal nodular hyperplasia. However, the doctor just called with the results of my 6-month CT scan, and it's growing rather rapidly (which FNHs don't do). A liver biopsy WAS done before (with CT guidance), but the pathologist had a hard time on diagnosis and actually sent it to specialists at Johns Hopkins Hospital for a 2nd opinion. They now believe that the FNH diagnosis was wrong, but still can't tell me what it is. I'm currently scheduled for another biopsy and possibly resection. The doctors can't link my flushing to the tumor though. I just don't see how it's possibly anything else. My hair (on my head) has been falling out now, and just this week, I am now seeing little flashing lights when I close my eyes, for just a few seconds. My doctor's quickness in calling me about these results (the CT was just done a day and a half ago), the fact that it's growing, the concept that some of the best doctors on the East Coast have no idea what is going on with me, and these new symptoms have me SCARED OUT OF MY MIND. Does anyone have ANY ideas?!? I'm open to any suggestions! Thank you!!!
Everyone, thank you for the help!
Just as an update, my surgeon did schedule me for a liver resection for February 19th. He's going to take ~ 60% of my liver, and my gallbladder. He may also do a bowel resection (he seems to feel that I may have a tumor in my intestines that spread to my liver). They still can't tell me whether or not the tumor has anything to do with my symptoms. It basically depends on whether or not it's cancerous. If it's not cancer, they're adamant that the flushing red, diarrhea, hair falling out, & EXHAUSTION have nothing to do with it. So...while nobody ever hopes for cancer, I REALLY want to solve all of this! If anyone out there has actually undergone a liver resection or experienced something similar (like carcinoid syndrome), I'd still love to hear from you!!!
thank you!
Just as an update, my surgeon did schedule me for a liver resection for February 19th. He's going to take ~ 60% of my liver, and my gallbladder. He may also do a bowel resection (he seems to feel that I may have a tumor in my intestines that spread to my liver). They still can't tell me whether or not the tumor has anything to do with my symptoms. It basically depends on whether or not it's cancerous. If it's not cancer, they're adamant that the flushing red, diarrhea, hair falling out, & EXHAUSTION have nothing to do with it. So...while nobody ever hopes for cancer, I REALLY want to solve all of this! If anyone out there has actually undergone a liver resection or experienced something similar (like carcinoid syndrome), I'd still love to hear from you!!!
thank you!
Ashley1979
I would really appreciate being able to talk to someone who has actually undergone a liver resection. I have not spoken with my surgeon yet (he is supposed to be calling me shortly- ha!), but the hepatologist gave me a ballpark of 8- 10 weeks recovery. PLEASE tell me that you did not have to be out of work for that long- I'm going out of mind trying to figure out how I am going to live without a paycheck for almost 2 1/2 months! I am assuming that the docs will want to get me in for surgery fairly soon (probably by March?), since it's growing at a pretty fast rate. At the moment, I'm pretty scared. I've had surgeries before, but nothing as major as this. And I completely agree- I too think that liver lesions and their causes/side effects/concurrent conditions aren't understood yet. I just want an answer. I need to know WHAT it is, and what to do about it, you know? They are considering the possibility of it being a carcinoma or a neuroendocrine tumor with me too. He basically told me that it's a 50/50 chance of being cancerous, but they won't know until they operate and send it off to pathology. (I've already had a biopsy and it didn't tell them anything conclusively). Anyway though, again, I would really like to talk with you about the resection and your story, etc. Alot of your symptoms do sound extremely similar, and I'd love to know if you've experienced some of the weirder ones that I have too (or if I just have other weird things going on.) ;)
I will try to email you now, but I figured I would post this, just in case it doesn't work.
Thank you!!!!
Lauren
I would really appreciate being able to talk to someone who has actually undergone a liver resection. I have not spoken with my surgeon yet (he is supposed to be calling me shortly- ha!), but the hepatologist gave me a ballpark of 8- 10 weeks recovery. PLEASE tell me that you did not have to be out of work for that long- I'm going out of mind trying to figure out how I am going to live without a paycheck for almost 2 1/2 months! I am assuming that the docs will want to get me in for surgery fairly soon (probably by March?), since it's growing at a pretty fast rate. At the moment, I'm pretty scared. I've had surgeries before, but nothing as major as this. And I completely agree- I too think that liver lesions and their causes/side effects/concurrent conditions aren't understood yet. I just want an answer. I need to know WHAT it is, and what to do about it, you know? They are considering the possibility of it being a carcinoma or a neuroendocrine tumor with me too. He basically told me that it's a 50/50 chance of being cancerous, but they won't know until they operate and send it off to pathology. (I've already had a biopsy and it didn't tell them anything conclusively). Anyway though, again, I would really like to talk with you about the resection and your story, etc. Alot of your symptoms do sound extremely similar, and I'd love to know if you've experienced some of the weirder ones that I have too (or if I just have other weird things going on.) ;)
I will try to email you now, but I figured I would post this, just in case it doesn't work.
Thank you!!!!
Lauren
Hi Lauren81
I am a 28 year old female and have never had any serious health problems until this year. Recently however I went through a long medical experience that sounds somewhat similar to you. In May of last year, I started having an extreme skin rash where I felt itchy all the time and it evolved over the summer months into a rash of lesions/ulcers. I went to over ten doctors/dermatologists/infectious disease doctors and they couldnt figure out what it was but tried numerous antibiotics thinking it was a systemic staph infection. Finally at the beginning of August, one doctor did every test available, including ANA for autoimmune and liver functions tests. These were done several times during August and my GGT (liver enzyme) was consistently approx 600 (normal range 10 - 29 for someone my age) and my first ANA was positive but then negative the second time. Eventually, an ultrasound, CT scan and MRI showed a 13 cm liver tumor that the doctors could not determine whether it was FNH or fibrolamellar carcinoma definitively so I had to undergo a right hepactectomy. Thankfully, it was a large, atypical FNH. In hindsight, I now realize I was suffering from numerous symptoms during the summer including difficulty breathing (the tumor was attached to my diaphragm), extreme tiredness (I am usually very energetic) and abdominal fullness and back pain. It has now been about 2 1/2 months since the surgery and I am feeling better but it is a huge surgery and I still feel like I don't know exactly what was wrong with my skin since they never definitively cultured staph or told me what was going on. Since the tumor has removed and I have not been drinking, my skin ulcers/liver spots completely disappeared. Interestingly, I have started drinking alcohol in moderation again (I was told it was fine to do so) but am starting to think that my skin thing is DEFINITELY related to my liver problems/regeneration because the itchy feeling returns and lesions seem like they may come back the few times I have had alcohol.
I dont know if this helps but feel free to email me if you have questions about the resection and please tell me if any of this sounds similar to what you have experienced because, having gone through this for a while now, I am beginning to believe that these liver lesions are so recently being discovered that the nature of them and incidental symptoms are not truly understood well yet.
Good luck to all of you!
I am a 28 year old female and have never had any serious health problems until this year. Recently however I went through a long medical experience that sounds somewhat similar to you. In May of last year, I started having an extreme skin rash where I felt itchy all the time and it evolved over the summer months into a rash of lesions/ulcers. I went to over ten doctors/dermatologists/infectious disease doctors and they couldnt figure out what it was but tried numerous antibiotics thinking it was a systemic staph infection. Finally at the beginning of August, one doctor did every test available, including ANA for autoimmune and liver functions tests. These were done several times during August and my GGT (liver enzyme) was consistently approx 600 (normal range 10 - 29 for someone my age) and my first ANA was positive but then negative the second time. Eventually, an ultrasound, CT scan and MRI showed a 13 cm liver tumor that the doctors could not determine whether it was FNH or fibrolamellar carcinoma definitively so I had to undergo a right hepactectomy. Thankfully, it was a large, atypical FNH. In hindsight, I now realize I was suffering from numerous symptoms during the summer including difficulty breathing (the tumor was attached to my diaphragm), extreme tiredness (I am usually very energetic) and abdominal fullness and back pain. It has now been about 2 1/2 months since the surgery and I am feeling better but it is a huge surgery and I still feel like I don't know exactly what was wrong with my skin since they never definitively cultured staph or told me what was going on. Since the tumor has removed and I have not been drinking, my skin ulcers/liver spots completely disappeared. Interestingly, I have started drinking alcohol in moderation again (I was told it was fine to do so) but am starting to think that my skin thing is DEFINITELY related to my liver problems/regeneration because the itchy feeling returns and lesions seem like they may come back the few times I have had alcohol.
I dont know if this helps but feel free to email me if you have questions about the resection and please tell me if any of this sounds similar to what you have experienced because, having gone through this for a while now, I am beginning to believe that these liver lesions are so recently being discovered that the nature of them and incidental symptoms are not truly understood well yet.
Good luck to all of you!
Soonerman,
Thank you for the suggestions!
My gastroenterologist also felt that alot of my symptoms were similar to those of celiac, so he did have me tested, and it came back negative.
I also saw an allergist/immunologist, and went through the whole gamut of allergy testing again (I have alot of allergies, and have to be re-tested every few years or so). I am not sure if they specifically tested for gluten though; I will have to ask. He did try putting me on a plethora of antihistamine-like drugs to see if the flushing was a mast-cell response that could be halted. Unfortunately, it didn't work.
I have recently been advised to see some top-notch specialists at Hopkins about the flushing. Currently, I have to wait until the hepatologist decides whether or not surgery is necessary for this liver tumor. (I have a feeling that it will be; it's rather large and still growing.)
I am not the most patient person in the world, so in the meantime, I'll just keep gathering more ideas! Thank you for your help!
Thank you for the suggestions!
My gastroenterologist also felt that alot of my symptoms were similar to those of celiac, so he did have me tested, and it came back negative.
I also saw an allergist/immunologist, and went through the whole gamut of allergy testing again (I have alot of allergies, and have to be re-tested every few years or so). I am not sure if they specifically tested for gluten though; I will have to ask. He did try putting me on a plethora of antihistamine-like drugs to see if the flushing was a mast-cell response that could be halted. Unfortunately, it didn't work.
I have recently been advised to see some top-notch specialists at Hopkins about the flushing. Currently, I have to wait until the hepatologist decides whether or not surgery is necessary for this liver tumor. (I have a feeling that it will be; it's rather large and still growing.)
I am not the most patient person in the world, so in the meantime, I'll just keep gathering more ideas! Thank you for your help!
You may look into Celiacs Disease or an allergy/intollerance to gluten. The flushing and ulcers in mouth (Aphthous ulcers) are a common symptom. Have a look and see if it fits; you could always try to eliminate gluten for a few months and see if things get better if you don't want to do the DNA or antibody blood test.
Classic symptoms may include:
abdominal cramping, intestinal gas, distention and bloating
chronic diarrhea or constipation (or both)
steatorrhea -- fatty stools
anemia - unexplained, due to folic acid, B12, or iron deficiency (or all)
weight loss with large appetite, or weight gain
Other symptoms:
dental enamel defects
osteopenia, osteoporosis
bone or joint pain
fatigue, weakness and lack of energy
infertility - male/female
depression
Aphthous ulcers
Dermatitis Herpetiformis (DH) is skin manifestation of celiac disease characterized by blistering, intensely itchy skin. The rash has a symmetrical distribution and is most frequently found on the face, elbows, knees and buttocks.
Classic symptoms may include:
abdominal cramping, intestinal gas, distention and bloating
chronic diarrhea or constipation (or both)
steatorrhea -- fatty stools
anemia - unexplained, due to folic acid, B12, or iron deficiency (or all)
weight loss with large appetite, or weight gain
Other symptoms:
dental enamel defects
osteopenia, osteoporosis
bone or joint pain
fatigue, weakness and lack of energy
infertility - male/female
depression
Aphthous ulcers
Dermatitis Herpetiformis (DH) is skin manifestation of celiac disease characterized by blistering, intensely itchy skin. The rash has a symmetrical distribution and is most frequently found on the face, elbows, knees and buttocks.
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