I've had extremely bright red flushing for 3 1/2 years now. This is a dry flushing and I constantly freeze. I was diagnosed by three doctors with mastocytosis and now with 3 new doctors I've been diagnosed with carcinoid syndrome. I've been on treatment (sandostatin for carcinoid) (ranitidine for mastocytosis) for both of these and neither of the treatments are working. My right hand is extremely red and my toes sometimes turn blue. My eyelids look they are sunburnt - actually all of me looks sunburnt. I had one doctor kick me out of his office in January saying I was sunburnt. I had NOT been in the sun or a tanning bed. I've seen almost 30 doctors and no answers. Three years ago when this first began, it started off with severe itching inside my body all over, then 2 days later I woke up with severe bright red flushing. It left after about 3 months, stayed gone about 4, then returned. The second year was the same. This past Nov. it started up again and HAS NOT let up. What in the world is wrong with me. This past week I began seeing little flashing lights. It only last a few seconds, then went into little black spots then blurry. I asked my family doctor to test me for Lupus---due to some white strips across the inside of either side of my mouth plus some extreme fatigue. WHAT IS GOING ON WITH ME???????
I've had 3 CT's, 2 MRI's, an octreoscan and a pet scan. The MRI is showing "simple" cysts in my liver, kidney, pancreas and cysts in my uterus, ovaries and fibrocystic changes in my left breast. The doctors do not seem concerned about these cysts. The cancer docs made their diagnosis of carcinoid cancer because the OcteoScan showed hot spots in my liver and kidney. This scan is "suppose" to only image carcinoid tumors or spread. BUT the other scans are NOT imaging a primary tumor ANYWHERE. The doctors say that carcinoid tumors are not primary ones in the liver or kidney that the octreoscan is showing. Why would a scan image hot spots in the liver and kidney and IT not be there? What is the possibility of a "false positive" in an OctreoScan? And if I don't have masto or carcinoid - what in the world is wrong with me? I've read the 7 things that cause flushing and nothing is proving any of these things on me.
i think i'm in the beginning stages of what your are going through. i, too, want to know what the heck is wrong with me. my face is RED and hot all the time. primary doc, allergist, and dermatologist all say its my eczema flaring up. i beg to differ. i truly feel something is really wrong with me. i'm still having blood tests done and waiting for the results. i feel your pain!
You sound EXACTLY like what I've been going through (for the past several years)!!!!! However, in my case, the docs did find a primary tumor in my liver. It's rather large, so I'm actually having a resection done on February 19th. I have also been to immunologists, endocrinologists, dermatologists, rheumatologists (I was negative for lupus), gastroenterologists, and now, finally a hepatologist and an oncological surgeon. My surgeon also feels that I probably had an initial carcinoid somewhere in my intestines, and that it spread to my liver. I have had barium xrays, ctscan, mris, a pet scan, a camerapill test, etc. He has just scheduled me for an octreoscan next tuesday and wednesday. (The other doctor didn't do it before, because of all of my bloodwork/urine workups were negative for carcnoid sydrome). Anyway, I just wanted to let you know that I have the EXACT same symptoms, down to the little white spots in the mouth, blue toes, and flashing lights, except I also have a few others: my hair (on my head) has been falling out, I am ridiculously HOT instead of cold, I sweat much more than I ever usually do (and this is yucky, but it really smells strongly), and I have chronic diarrhea. Is it just your face that flushes? Or like me, do your chest, upper arms and right above your kneecap on your legs also turn tomato-like? You sound so much like me, it's scary. I have been looking for anyone with my symptoms for MONTHS, and just 2 weeks ago, another person replied to my post (which is pretty much identical to yours- I bumped it so you can see. It titled BRIGHT RED FLUSHING- please help! by lauren81 Dec 05, 2007 03:36PM ). Anyway, this other person, Ashley1979, also has a very similar case and had a primary liver tumor. It was the same for her- she couldn't find anyone with our symptoms, either. Anyway, she has already had a resection done. I also have already had a biopsy done- they couldn't tell for sure whether it was cancerous or not. Hers turned out to be an atypical focal nodular hyperplasia. We'll see what mine is. Either way, all of her doctors told her and all of my doctors have been telling me that benign tumors can't cause these symptoms, but obviously, they're wrong, since hers was benign. Keep pushing your doctors to do more scans of your liver, etc. I can't imagine why they aren't concerned with these hotspots/cysts in there. My tumor is about 8cm now (the size of my fist), and 3 cm of that was only in the past 3 months. These things can change rapidly. I have no choice now but to have major surgery. If they had caught it sooner, when it was smaller, they might have been able to do it laproscopically. Now, I get to have 60% of my liver taken out, along with my gallbladder, and possibly portions of my intestines. Plus, we still aren't sure whether or not it's cancerous. Anyway, if you want to talk more about your symptoms, or ask questions about how they figured me out, I'm more than willing to speak with you. It was amazing finding Ashley 2 weeks ago, but you also having the same symptoms is crazy. Are you a young white woman too? I swear if I had money, I'd fund some massive gastro lesion research today! lol. Anyway, just send me a message if you want to. Good luck, and take care! - Lauren
I have the same problem, people are always asking me if I'm ok, ah no I feel like **** all the time, I'm so hot and sweaty, I have anxiety about it all the time. I've been to my Dr several times,(among other Dr.s) and no diagnosis, he said it's all in my head and said to go see a shrink??? I have no ins and had to pay him to the tune of 140.00 for that stupid advice. I have no more confidence in the health care profession, that is what I have learned since this problem arose 4 years ago. Let me know if anyone gets any real help, thanks.
I have been going thru hell for 5 yrs. I had cervical decompression surgery 3 yrs ago. I had been in severe pain prior to surgery. I was told that I had severe cord compression in my neck from an injury. After the surgery I am still suffering, but differently. I am being told that I have RSD with myelopathy. My feet turn blue and red and are extremely painful. My hands also change colors. I thought that the hot flashes (face,neck,hands,feet) were from menopause, but they have gotten severe and bring on severe pain. I get very red and feel odd. I also have a heavy feeling in certain areas of my body. I also swell when the color changes in my feet and legs.
I was going to make a suggestion.
I would see a neurologist just to make sure it is not spine related. Hopefully he will order an MRI of the whole spine. I will be very curious to hear the outcome. Sure hope I am wrong.Please let me know if you discover anything else. Thanks
First of all my best wishes in your healing and therapy. I am so glad I found this post. I am a 43 year old male - with exactly the same symptoms. The upper body redness, you can actually see a very strong demarcation line on the edge of my face from my normal skin to the red. I have had this condition for as long as I can remember. Now recently, in the last 6 months I have developed this debilitating exhaustion and profuse and constant sweating. I have burned through many nice shirts. I am constantly running hot. I am more comfortable in freezing weather than I am in Southern Ca (where i live).
I recently was rejected for life insurance due to abnormally high liver tests (as well as some cardio). I have gone to an endocrinologist who found nothing and my GP just blows it off as it doesn't really matter.
It sounds like I should focus on the liver and be more aggressive with my doctors because this exhaustion is killing me. I don't really care about the redness.
I can really feel for all the posts frustration in a diagnosis. My wife has lupis and it took her a good 5 years to be properly diagnosed and treated.
I'd love to hear how others treatment has gone. I will update my findings.
I'm not sure if my symptoms are the same thing, but it sounds close! The first symptom I noticed was the profuse sweating of my face, neck, chest and sometimes back. The redness is in my face and I also have rosacea so I can tell where that is and where the abnormal redness is. I also have redness on my arms and it looks like I am sunburned. Trust me, I live in Oregon, I am not sunburned! If I excert myself physically or even just sit outside if it is over 60 degrees, I start sweating and am so uncomfortable I have to go into my bedroom where my husband put an air conditioner for me. My arms are VERY tender. You can't even just lightly rub your hand over my skin or it hurts and I have started running a low grade fever, 99 - 101 degrees off and on for no reason, like a cold or the flu. I am also tired all the time and can't get motivated at all, when I used to train horses for a living, in the heat! Is this familiar, the tenderness and fever also? thanks for your comments
I had a giant cell sacrum tumor removed twice and then radiation that killed my ovaries. Since the first surgeries I have had one type of hot flash or another. Lately, every time I talk to someone I turn bright red all over my face, chest, arms, hands, feet. I wake up at night wanting to scream because these wake me up then and one foot hurts so much I'd like to take it off during some of the night ones. I thought it was all sudden menopause related, but estrogen and effexor remedies don't work. I wonder if I need to get other blood work or scans. I do not want to take more medicines that mess with my brain and moods to deal with this, but how am I supposed to work if I can't talk to anyone (anyone- friends, family, strangers) without this flaring up, not to mention I can't sleep more than 15 mins at a time. Where do I begin asking these questions? So far every dr has assumed it is the medical menopause but the fans work better than anything else. I am ready to GET BETTER and this is one of the most debilitating symptoms left (besides my short term memory). Any ideas about how to specifically get them to make sure it's not something besides medical menopause? I am only 34!
There is a place in Wichita Kansas that I would advise all of you who are wondering what is going on. This place is called The Center..that is a short version of the name, but I don't remember the full name. They do all different types of natural testing...things that other doctors haven't even heard of. I've been there several times and those doctors there are amazingly brilliant. They can figure out what's wrong with you. They're actually not that expensive either..not like most medical facilities and they won't give you the run around..they'll find out what's wrong. Call them. Their number is 316-682-3100 You'll be glad you did. I'm hoping for the best for all of you who are sick..I've been there too!
My husband gets boiling hot when he's sleeping. He feels like a heating stove and it literally makes me sweat all night long. Does anyone else have that problem? He doesn't drink water very much and does drink too much caffeine. I'm wondering if he's dehydrated, or if he has an infection. He's very moody all the time and feels irritable and angry, anxious and depressed, as well. He is now taking Depakote, but just started that recently.
dear gwen, I am a 30 year old male that does the same thing. i hate water but love mountain dew. lots of mountain dew. My body temp. is extremely hot like a stove. if i take a cold shower letting the water hit my head first the water is warm by the time it gets to my feet. and im very moody ,anxios, angry, happy, and depressed like that also.And i have a lot of energy as well.Have him be checked for hypertention or adhd. also have the docs ckeck his liver as well. thats the cause of why i feel like an oven. Good luck
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