Discussions By Condition: I cannot get a diagnosis.

Long Thread, Sick Mom

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: miserableMOE
  • July 24, 2007
  • 03:45 AM

Basically, I feel like ****! Everyday, all day long.
I have some post on here from the past but haven't had much time as I've been to just about every Dr in Pittsburgh PA.
Simple facts....35 yr old female, daily headaches, sweating episodes lasting for up to 1 hour, spikes in BP, palpitaions, weight gain, recently got 3rd menstrual cycle for this year! still here after 12 days!!!!!, so so so very very very tired. Can sleep for 17 hours and feel like I never even dozed off. Will sleep more and never get that satisfaction of rest feeling. Weight has gone from 115 to 143 lbs!!!! (funny, one Dr told me maybe to watch what I eat?? I was close to being anorexic, I usually do not eat!!!) (idiot) Went from being very athletic person, lifted weights at least 5 days a week, walked, rode bikes with daughter. Have been OCD as long as I can remember, especially about cleaning. Now, it is still there BUT I do not have the energy to give in to it. I used to clean everyday. Now I am lucky once a week! I have 7 baskets of laundry in my roo needing to be put away! (not me, ever)
So anyhow, one main thing that has come back in all my test is high norepinephrine in blood. Now over 800. Normal is 0-399! Seems to primary Dr to be pheochromocytoma. Had adrenal glands scanned and nothing there. In May had gallbladder removed by ER visit. Even before that and especially now, I am so nausiated. Smells of some food makes me feel like throwing up! Diarhea all the time. Bp goes from my normal of 85/65 to 120/95. Been told this is not high because it technically would not require medication. I am on Fentanyl patches due to back issues 9herniated discs and fractured tailbone) But only started thi after my first blood draw came back abnormal in Oct 06. Dr's keep giving me jugs to check pee. My total catacholomines come back high in blood but not high in urine. Endo just said she felt a nodule in my neck this past week. Wants to ultrasound it but is going on vacation and cannot do it until Sept!!!! Oiss in that I am going to PCP on Friday and having it done. Dr's kept telling me could be starting menopause with sweats and lack of periods BUT all my female hormones right in normal range. It is 74 degrees here now and I am freezing as if it were snowing!!! Then I can be in air conditioned room and sweat like a pig for an hour. I get this thing where I feel as if someone puts a blanket over my brain for a few seconds. I do not think I pass out but like everything shuts off for a second!!! And my insides feel black and blue!!!!!! It all aches. And I get black and blue marks as if I were wrestling a bear!! But they will show up after laying in bed for 2 days!!! When I do eat, it is cereal, dairy, fruit and veggies. some fish and little red meat. When I do eat red meat it has to be cooked so well done you can breake a window with it!!!! Even if you read this and have an idea or thought, please, I am now into begging! I need an aswer. This is so not fair to my 9 yr old little girl. I went from super mom to sick mom and she just doesn't understand why mommy never ever feels good. I've missed appointments from being to tired to make and it could be at 4 in the after noon! I do not understand any of this. It is really straining a very happy marriage and family. Sometimes, most times Dr's make me feel like hypochondriac! But I hav no way of making these blood levels raise! Also, potassiums seems to have been low EVERY time I get blood. I take supplements and had to have IV 2 times this year alone!

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3 Replies:

  • I have same symtoms, mostly, plus many others. I'm on parasite/detox cleanse program with some improvement. The night sweats, they say from a certain parasite invasion...Just dicovered too I'm alergic to strawberries. I also sweat and burn like crazy with granola. My brain feels like it's on fire, esp. PMS times. Not sure if you can email me direct from here, but feel free gumdropss @hotmail .com I would like answers as well. Best of luck and hopefully I can hit the gym once again....as my weight up 25 poounds as well...yikes.
    seattlehealthnut 3 Replies Flag this Response
  • I'm sorry you have to deal with that! You mentioned that your adrenal gland was scanned for pheochromocytoma. 90% of these tumors are located there, but they can also be located in the heart and the area around the bladder.
    Anonymous 42,789 Replies Flag this Response
  • my PCP Dr seems to really be leaning to the pheo tumor SOMEWHERE ??:confused: He has requested a PET scan 4 times and my insurance will not cover it. (bastards) From what he has told me and what I have researched, I too, have heard of these tumors showing up in other spots. So far, my adrenals, kidneys, gallbladder and sping have been scanned either MRI or CT. I actually haven't come across anyone with one on their heart...but who knows. My norepinephrine level keeps going up and up. I assume the PET scan would pick it up (if there is one there) but the test cost like $2000. I know my health should not have a price on it but I have major medical through my husband and I am on medicare. There really is no reason that this should not be covered!!!! Thanks for the reply.
    miserableMOE 52 Replies Flag this Response
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