BRIGHT RED FLUSHING- please help!

[lauren81]

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!!!

[AshNine]

in regards to the body symptoms

i urge you both to read the information in these links, fibromyalgia does not show up on any tests yet altho this treatment is primarily for autoimmune disorders like lupus it explains that its also seeming to work for that as well and there is a possibility that maby you have an endorphine defficiency, do you ever find yourself craveing chocolate especially dureing your flare ups?
and i would consult your doctor with this information im about to give as well and if he says your nuts find a new one and chew him out for not thinkng outside the box a little, no growth comes from stagnated thinking

http://www.gazorpa.com/interview.html ---an interview with the doctor whom discovered this treatment

http://www.lowdosenaltrexone.org/
information on the treatment itself

http://www.revolutionhealth.com/drugs-treatments/rating/naltrexone-for-lupus
some testimonies of lupus sufferers whom are undergoing the treatment calling it a miracle, search and you'll probly find more
best of luck
Ash

[lauren81]

AshNine,

I can't say that I have any of those same symptoms. I have plenty of odd symptoms, but those are actually not on my list for once! I tend to have other things, such as an odd heartbeat (supraventriuclar tachycardia) and vaso-vagal syndrome (I pass out alot). I'm sorry you get those attacks though- it doesn't sound fun!
I do eat pretty healthily. Not as good as I could be; I don't eat organic, but I do avoid processed sugars/flours, etc. I have not had a soda in over 2 years now. I do not drink caffeinated tea on a regular basis (I don't drink coffee at all). I eat little red meat, little seafood, lots of fresh veggies & fruits & whole grains. My one weakness is dairy products- I can't give them up- I've tried!
Thank you so much for your reply though. I will definitely contemplate going organic. At this point, I'm willing to try anything. thanks!

[lauren81]

Thank you! I appreciate any ideas at all. Unfortunately, I have already had an ANA titer (lupus test), which came back negative. Just last week, I finally got in to see a rheumatologist at Johns Hopkins, and he is still reviewing my other doctors' reports. He did say that he didn't think I had any kind of connective tissue disease though. I have already been to an immunologist also, but I was just told that I should get a second opinion from a specialist (again, at Hopkins). It's looking more likely that surgery will be necessary to remove the liver tumor, and I'm hoping against all hope that that will just solve everything! (I can dream!) Thank you so much! Good luck- I hope your lupus is under control.

[AshNine]

also i forgot to mention about your liver,

the liver is the only organ in the body that can basicly regenerate itself from nothing, if the tumors growing you may want to have it removed and inform your doctor your aware of the potential of the liver and its ability to repair itself, in the meantime i advise you start taking a daily regimine of the herb milk thistile wich has saved my life and liver from tylenol poisoning, drink organic pure cranberry juice to help the toxins stay flushed out and above all else EAT AVACADOS they have been scientificly proven to prevent and even reverse bad liver damage wich would be good to post op should you have it removed. also cranberries are very very high in antioxidants and if you can stand the taste i reccomend either getting them with every grocery order, i hate them but my body is constantly forcing me to eat them for lack of a better explination, had my kidney's almost fail a few weeks ago and a 10$ bottle of organic cranberry juice and 2 containers of organic cranberries saved my life. sorry for the rant style of all this but i also suffer from severe adhd but at the same time when i want to focus on a particular subject i focus ten fold but it comes out all jumbled because ive focused too much and start branching out on every possible idea that can be connected to the root of my study. hope all is well and hope i can get some answeres myself, had a regular blood test taken on the 3rd dont kno if that will show anything but the doc who usually gets back to me in a day has had the results for a a few days now and wont consult me over the phone wich tells me maby he found something and i can finally stop worrying about what i might have and treat what it is i do have, im fine with knowing what is wrong with me i just hate the suspence leading up to it lol. ride the spiral
Ash

[AshNine]

i spent 8 hours yesterday researching information on lupus and other autoimmune disease disorders. my question to you and living with lupus is, do the veins on your hand ever visably bulge and throb as well as your mouth waters and nose runs. the coldness in the hands and feet sounds like raynaud's wich in itself isnt that bad just really uncomfortable, my hands are ice and sore at the moment, also if you do get the swollen throbbing hand veins does your face ever feel like its swollen to even if it might not look it and have you ever had your blood pressure taken while having such a flareup. not trying to put symtoms in your head, if you had these youd know pretty well lol. im 25, 6'2" 180lbs can walk 5-10 miles at a clip but hen one of these attacks sets in im bound to laying down and having a hard time breathing. my best advice for now is try moving to organic foods and stay away from all unattural additives and i mean this to the highest degree, i know they cost more but you tend to eat less when going true organic and make sure what your getting isnt just hitching a ride on the health marketting train. the reason you tend to eat less and actually save money in the long run is because the one tomatoe that costs a dollar has about the same ammount of nutrients as the bag of tomatoes  that costs 3$. also for the cold hands and feet ive heard and have had some results myself with ginko biloba, try to keep  a normal sleep schedual and if you smoke quit, that will help the raynauds tremendously. im down to 2 a day useing chantix for 2 weeks now and that drug has been a miracle for me. now if i could just get this nerve pinch in my back to ease up ill feel better. livingwithlupus other than my symptoms what should i tell my doctor as far as tests that would be the best to run if this really is lupus im suffering from as well

also my theory on autoimmune disorders and its only a theory is that the body has become so toxified from environmental and diet issues that the immune system actually sees its own host as a threat and thats why i say give the organic a try and also get a colonic no word to lie and no joke, everything has high fructose corn syrup in it these days and that stuff coats your digestive tract and intestines with a slime that doesnt allow proper viatmin absorbtion causing everything from constipation and diareahea to scurvy and malnutritian. so with those questions asked and statements made i wish you the best of luck and if you need support you can always find me on aim as AshNineFallen. well my hands are starting to throb from all this typing, im also a keyboard player and guitarist so that sucks as well but i fought through an attack last night and played for 55 minutes strait before i fell asleep, actually helped in a strange way even tho it aggrevated things. hope all works out and livingwithlupus if you can answere anything i myself have asked please let me know, i may have given some advice but you would know better than i. please hit me back;)
love peace and hold the grease
A S H
  l  h  e
  l  a  a
      l   l
      l
rise like the pheonix

[livingwithlupus]

Lauren,
   You sound like I did when I started with the symptoms of lupus.  I am NOT saying it is lupus, just that it could be an autoimmune issue.