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1440512 tn?1294471633

Please help im running out of options

under six months ago i started a rapid decline of weight. 100lbs to be exact. soon severe nonstop migraines resistant to shots and meds lasting 2 months straight. neurologist said 5 mm cyst but would not cause problems this was followed with a hypothyroid and very low potassium. no relief next iron and calcium so low ordered to pic up scripts that day and take them. potassium increased four times and still not stable. naseau diarreah intolerance to majority of food smells as well as other things. i can only tolerate crackers olives and pickles. i live off of ice chips phenegran and loratab 10's. no relief no diagnosis other than cachexia but not the underlying cause. fatigue is getting very bad. i feel like im dying. what kind of dr do i need to be seeing based on my symptons. I need direction. i tested negative for hiv and now the cancer testing has begun. my dr always calls me in and says this is it you will feel better now but i continue to get more ill. test done is major blood work, cat scan, colonoscopy, mammogram twice, pap smear all negative. meanwhile they thyroid levels wont go up and the potassium is always drastically low.
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1440512 tn?1294471633
you are very helpful and i thank you. unfortunately i dont see my dr till tuesday. hes out of town. im trying to keep my chin up but its hard to do when all you feel like doing is sleeping. i make myself eat only to get sick. i am so dehydrated but dr isn't here for me to get an iv. i went to the foot dr today and he even mentioned how dehydrated i looked. i hope the magnesium and ch125 results are in tuesday. they were suppose to schedule the endoscopy and colonoscopy but its been a week and no appts. ill ask for another ct and possibly a mri. i have three meds already for naseau but they dont work. new symptoms keep popping up. my stomach starts swelling like im 9 months pregnant as the day goes on. at night im asleep and feel like im gonna be sick and it wakes me..i sit on the edge of the bed till i feel steady. i feel a pop a little burn and clear odorless fluid rushes from me. its like when your pregnant and your water breaks. it burns a little than relief as it flows. i am far from pregnant. tubal in 93 and im gay. i dont even know what to think about the new symptoms and my dr went on vacation before i could see him. my ovaries hurt so bad now that it actually makes my back throb. my gf rubs my tummy while i cry at night. im miserable and this isnt the life i wanted. i cant even finish my degree because im so ill and the drs contacted my college and informed them that until my medical situation was figured out im on medical leave. I had a year and a half in for web design and interactive media. i told my youngest daughter we would graduate college at the same time. day by day more things are being taken away from me because nobody has the answers and truthfully i havent the energy to put up a fight much longer. no not suicide i kinda want to go to heaven and its only a permanent solution to a temporary problem.
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Avatar universal
Dear LoveChell,
Bless your heart.  You are one sick puppy.  Keep in mind, that CH125 test isn't the final one, plus it gives false positives, so no matter which way it comes out, it will still need to be followed by a CT scan.  Thought of another food, Texas Toast in the freezer section or any kinda garlic bread.  Hmmmm.  That's handy that you don't have to worry about not getting pregnant, so scratch off bc pills from your list.  One other thing, pain killers will sometimes cause constipation, hope your digestion is working and not stopped up.  If it is, at the drugstore you can get a little box of tubes called BabyLax or PediaLax, squirt two in your rear and any waste that's right there will come out in minutes.

Not to disregard how awful you feel, but twice in the last ten years (I'm 60) I've thought I was going to die.  Amazes me how if docs can't find it on a test, they send you away.  I hope you can get some tranquilizers from your therapist, they will help you feel a little better whilst you wait and wait for SOMEone to DO something for you!  And if you can get some I.V. nutrients and fluids going, it might jumpstart your willingness to eat.  I can't eat certain things either, a medication I was on tore up my guts and rotted my teeth.  I got better, but to this day, rich foods upset my tummy.  Most of my days I have a little nausea, and when I don't get enough protein, I begin to wither away.  I think I know that dark hole you've fallen into, it's not a good place at all, and really hard to get back out.

When your day gets rough, do what I do, put yourself in your favorite vacation place, like me, I go to the beach in my head.  I can hear the waves, feel the warm sand on my feet, the laughter of children, smell the salty air, and I watch a kite floating silently in the wind.  I had dental work one time, couldn't take the gas, so I said just have at it and I'll bear up.  And so off I'd go to the beach.  You'd be amazed what you can put up with like that.  But I gotta say, whether it makes you sick or bloated, you GOTS to find something tasty to get down that throat of yours.  And a little brandy might take pain's edge off.

I'm glad you got you a girlfriend to help you out.  Ask her to do for you, check your temp for you, bring you some goodies to eat, adjust your pillow.  You need comfort right now big-time.  I'll be thinking of you, and hoping SOMEbody will please DO something for you.  And call that doc back, if it's positive or negative, next thing outta your mouth should be, "I want a CAT scan!"  I'll be listening for you.
GG
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1440512 tn?1294471633
I really appreciate your words of wisdom. every day new symptoms occuring and im helpless. my dr wont be back till tuesday so i cant do anything. I did get checked to see if im dehydrated and is confirmed. i eat ice chips like crazy. my food intolerance has reached new heights. what i could tolerate before one by one make me sick now. since my dr mushed and poked around on my stomach my ovaries are killing me. ive had to double up on the pain meds. now i have this stomach extension to the point it really hurts. it seems to get larger as the day goes by. then you would think im pregnant but i know one hundred percent im not. im gay. in the middle of the night i wake up feeling horrible. i set on the edge of the bed for a sec. last week same thing but as i was sitting there i felt a pop in my stomach then a burn and clear fluide rushed out of me. its like when your water breaks and you feel youve had to pee forever and then your so relieved. im not jumping to conclusions on any of this. all i know is my dr now says i am a very challenging case. then because my gf was there he gets on my left side puts his hand on my arm and tells me i really believe this is ovarian cancer. of course he wants test results back first. it just wasnt very comforting to hear. i feel like im wasting away. my life robbed from me. i use to be so playful and laugh and anything to make a person smile. now my days are spent in bed being fed handsful of medications not able to eat living off ice chips and cant seem to stay awake much. ive been to multiple drs but this is the first one who wants that answer as much as i do. im on no new meds except the ones they have me on since i got sick. the others ive taken for years and my blood levels are always checked with them. cancer has taken so many of my family members away. god was with me to beat the cervical cancer. cancer or not im sorry to say i believe in my heart im gonna die. while my body is being tormented there is never an answer or way to fix it. you cant live like i am continue to get worse and get better without the answer. ive seen neurologist cardiologist a surgeon had two mammograms an internal ultrasound not looking at the ovaries pelvics and pap smears i cant even name the all the test. my thyroid will be retested tuesday. i live in a small town and i think my vitamin iron depletion and potassium depleation along with a thyroid that can not be controlled for some reason is beyond their understanding. i will however take your advice and suggestions to heart. the drs office called and got my voicemail. i didnt return the call. everytime i have its been really bad news. I am waiting on the ch125 blood test results. i just need a few days to get a grip.
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Avatar universal
LoveChell, ask your doctor to PLEASE do a CT scan of your abdomen.  It takes a while to set those up, so it needs to be arranged ASAP.  The CT needs to be done to look at the small intestine and your ovaries (particularly since you've had cervical cancer).  I also think you need to ask to be given NUTRIENTS (food) and fluids via an I.V. once a week as an outpatient.  And I would like for you to take your temperature a few times a day, and if you got anything over 100 more than once, call your doc forthwith or go to the ER. That could signal an infection, which you could get from, say, something rupturing in your abdomen, which is deadly.  And you need an endocrinologist to (a) really work harder at getting your thyroid numbers right, and (b) do tests to make sure your pituitary gland is working properly, too.  

PLEASE try to drink some extra water, you can add crushed ice and peppermint leaf and a little sugar to make it more palatible.  You can drink rice milk, does not cause allergy.  There is a microwavable rice meal in a bag that you find in the grocery store rice section, heats up in the package in a couple minutes, yum-yum. Good old chicken noodle soup with extra noodles is always manageable, put some croutons in it.  Scrambled eggs with cheese always taste good, you can put a couple olives in it.  Subway sandwich with everything on it & with oat, wheat or garlic bread is great, and so is Hardee's hamburger with mushroom gravy, they taste good when nothing else does.  

Now, I think you need to talk with your therapist about prescribing you some mild tranquilizers until they figure out what is wrong with you (will make you hungry, too).  Also, she could give you Lyrica for pain, must be increased a few times to reach a plateau of comfort.  And keep in mind that SOME birth control pills and other medications like for hypertension, anything that upsets your tummy, can really do a number on your mineral levels, so if you take any of that stuff, or any other medicine when all this happened, have the prescribing docs review everything and adjust accordingly.  Wish I had more for you.  Don't jump the gun on ovarian cancer until they can visualize it on scan picture, but I'm with you, if it's there and advanced, Hospice will help you with final life choices.  GG
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1440512 tn?1294471633
oh i forgot. ive been to a cardiologist, neurologist, 2 mammograms, pelvic and pap smear and a colonoscopy once already, ive had xrays and head cat scans, every blood work known to man and a urinalyais which had blood in it and blood in my bowel movements on and off internal ultrasound of my cervics tubes but not the ovaries. food is my enemy and i use to drink 8 /24 oz diet mt dews a day. now im down to two. it makes me sick to drink and yes i have tried juice and other drinks. i am allergic to milk so i cant drink that.
Helpful - 0
1440512 tn?1294471633
okay my cyst is on the split of the brain and is only 5mm. I do have the cachexia. hiv was negative. vitamins are leveled one week the falling fast the next. i went to a new dr and right away he scheduled some test. i had the ch125 blood test done for ovarian cancer which he feels would be in the late stage. he had me lay down and thump on different parts of my stomach and when he hit the ovaries i was screaming. i beat cervical cancer before. he is getting a endoscopy done as well as another colonoscopy. the weight loss started way before the other symptoms. he gave me two medications plus the phenegran to help me eat but they arent working so great. he told me he was sorry but he couldnt make me feel better only try to make me  comfortable. he sounds like an ******* but finally someone is shooting straight with me. now mid day my stomach becomes so extended it hurts terribly. i awake at night sick so i set on the side of the bed. ive started feeling this pop a little burn and fluid gushing from me. its like when your waters broke when your pregnant. when the fluid is coming out its like youve had to go to pee real bad and your finally getting relief. its odorless and has no color. last night the pain where my ovaries are was so bad i curled up in the fetal position. my pain killers which are very high couldn't even touch the pain. my migraines are back bigger than ever. my fatigue multiplied. whatever this is its away at me. ive done all the iv replacements four increases of potassium a huge dose of iron and calcium my thyroid levels dont even show my medication in my blood stream even though they keep increasing it and now they are testing my magnesium. i feel like death is at my door step and i am helpless to give it a fight. i am so serious ive planned on being cremated contacted certain family members with instructions of what my kids will be sent that i want them to have. requested a dnr and my ashes to be scattered over the blowing rock nc overlook. i know wait for answers but they may come before anything can be done. i really appreciate your help. the dr placed me on a gluten free diet not for celiac but it seems to have favorable effect for cachexia. i stay really bad dehydrated. i do test after test only because my gf wants me to. shes in denial and pain. i promised to keep doing them. what i really want to do is enjoy the time i have left laughing loving and making memories. my therapist and i have started my bucket list. she is my only release about feeling what i do about this. i get to say how i feel and be listened to without hurting my loved ones.
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Avatar universal
Dear LoveChell,
I agree with Fred's post, you could have Chrohn's or Celiac disease, where malabsorption is going on, which would explain your low mineral levels, and of course the weight loss.  But you've had a colonoscopy, so perhaps it's instead the small intestine is in trouble and not absorbing as it should.  Also, you could have pancreatitis, it can also cause wasting syndrome and some of your other symptoms.  So, with those two things needing investigating, they can do an endocscope down your throat and see what's up with those two items and/or a new CT scan with contrast specifically looking at those two areas.  

I do know that they need to periodically have you in to get some nutrients via I.V. in your vein, maybe once a week would be convenient.  Try putting some olives in that rice Fred mentioned, and olives in eggs with cheese, get olive loaf lunchmeat, pizza with olives, V-8 with some olive juice poured in there, and whether you like it or not, drink some milk following trying to eat those items.  And give OJ a shot to sweeten up and quench that mouth of yours.  

I would be interested what they find out about the cancer thing, because even tho the growth they found was quite small, there's a chance it came from elsewhere.  And I have to assume they've already made sure your heart and lungs are okay, they can figure into this somehow, a simple chest X-ray would be a helpful part of investigating those, as well as any cancer that might be there.
GG

Fred,
Sometimes medications can cause all sorts of gastro problems.  Have your doc review whatever all you're on, and switch any that may be drying you out or upsetting your tummy.  I always tell people that, it's what happened to me.
GG
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Avatar universal
Sorry to hear about your problems. I have some ongoing problems which are chronic and complicated (and unexplained) and have at various times made me so intolerant to food that I would get angry and nauseous if anyone even mentioned food. I would not eat for 3 weeks at a time. Funnily enough, the only thing I could force down me were OLIVES! But you really do need to eat otherwise you're going to spiral. Try and see if you can stomach plain boiled rice. The starch in the rice has a binding quality that can help with diarrhea. Plain yogurt and probiotics is also good.

Where is the cyst you mention? Is it a brain cyst or on your thyroid? Also, did the weight loss occur as a result of your food intolerance or where you eating normally when it started to go down? I take it you've been tested for Celiac's disease or other malabsorption disorders.

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