Doctor, Doctor....everyone is ignoring me...."next"

Discussion in 'General Health & Wellness' started by JennyK, Dec 4, 2002.

  1. JennyK

    JennyK New Member

    *sigh*
    I am here because I feel as thought I am being passed around from doctor to doctor and no one is listening.
    Ya know the old joke... ?
    Pt: "help!!...Doctor, Doctor...Everyone is ignoring me.."
    Dr.: "Next"

    I'm not sure where to turn next so I will post what I have been experiencing in an effort that someone will recognize what my problem may be.

    I am 30 years old.
    I have had poor health my entire life. it seems as though I am just always sick.

    I am asthmatic
    I have lost 60 lbs since I gave birth to my 3rd child 15 months ago.
    I am now 20lbs. lower than my pre-pregnancy weight.
    While i am not trying to gain weight, my efforts to lose/maintain weight are disproportionate to my loss.
    I have a pathetic appetite (which never used to be a problem)
    I have Raynaud's (severe cold/blue hands and feet)
    I have extreme fatigue (manicy though). I would say that 70% of my life I'm am completely exhausted.
    I suffer depression (treated with wellbutrin and therapy)
    I itch from head to toe.
    I have night sweats.
    I've had severe hair loss (it's now growing back)
    I've had pneumonia 3 times in 2 years. The last time it landed me in the hospital for 2 weeks and in the ICU for a week.
    I get very strange "papule" like lesions on my body that are extremely scarring.
    I have a large area on the top part of my right breast and extending over my pectoral muscle of thickened tissue. Its is 100% asymetrical from the left side. It has only been there for 2-3 months. I have had 2 mammograms and 2 sonos. Both radiologists said that it is not a mass but that is abnormal tissue thickening that should be biopsied....but 2 surgeons I've seen refuse to do it claiming that it is just excess breast tissue.
    I have periods of confusion and very low mental clarity.
    Poor memory and periods of dizziness.
    I have chronic joint pain.

    Family history...
    My mother has Systemic Lupus and Breast Ca. She had a mastectomy in 2000(age 50).
    My maternal grandmother and aunt (mom's sis) both have systemic lupus.
    The same grandmother also has hypo-thyroidism. The same aunt has hyper-thyroidism.
    Another maternal aunt just died of Pancreatic Ca (age 53).

    In the past year I have seen my general physician, 2 surgeons for the breast problem, 2 radiologists, my pulmonologist and a rhumatologist(sp?).
    I have had X-rays (of my chest for pneumonia and of my joints).
    I have had bloodwork up the wazoo.

    None of my bloodwork was conclusive....except for "Epstein Barr". My values were 480 (normal= 1-20).
    My sed rate has always been normal.
    My ANA was normal.
    Multiple other tests have been positive but they were not conclusive for diagnosis because other tests were negative.

    I cannot seem to find one doctor willing to get to the problem of why it is I feel so poorly.

    I don't know where to turn next :(
  2. annabanana

    annabanana New Member

    Jenny,
    my heart goes out to you. I know just how hard it is to get doctors to take us seriously, never mind having them actually care about our health and well being. Just off the bat - and though I am not an expert, but have done much self education, I would say that you are most likely suffering from severe hormonal imbalances, brought about through either poor diet, birth control pills, stress, lack of exercise, environmental toxins and the like - all of which can be dealt with once you know how. The first thing you must do, is forget EVERY thing you have heard about estrogen. The next thing you need to do is read Dr. John R Lee's book - What Your Dr. May NOT Tell You About Pre Menopause. Don't let the title fool you - many women who are experiencing much the same problems you are, are also pre menopausal, which simply means that even though they are still having periods, they are not ovulating every month as they should be. Ovulation is vital, as this causes us to then produce the hormone PROGESTERONE, which off sets estrogen. Estrogen is what is nessecary for menstration to occur, among other things, and - in the right proportions is necessary to good health. But when we aren't producing sufficient levels of progesterone to balance the adverse affects of estrogen - of which there are many - we start experiencing health problems like you would not believe. This includes every thing from hair loss, to dry skin, to acne, to insomnia, head aches, chronic fatigue, osteo porosis, to arthritis, to Alzhiemers, to heart disease, to cancer, any of the auto immune diseases - lupus, fibro myalgia, Sjogrens, Raynauds, MS - and that is just to start with. And let us keep in mind that we are just talking here about the natural estrogen our own bodies produce, never mind the deadly stuff that is found in our BC pills, HRT's, feed lot meats, and our environment. Best of luck and LOL - Anna
  3. JennyK

    JennyK New Member


    I will visit the other board that Mickey/Mouse mentioned.

    Anna,
    I appreciate your time. I will research info about hormones.
    I have not been on birth control pills in 8 years though.
    You mentioned menopause as well.... but menopause? I just celebrated the second anniversary of my 29th birthday ;)


  4. annabanana

    annabanana New Member

    Jenny,
    do not take what I said, to mean that you will stop having periods any minute now, and that you will next be sporting facial hair. As you read Dr. Lee's book you will understand that even though you may still have periods - if you fail to ovulate regularily each month, for a variety of reasons - you also fail to produce the vital hormone - PROGESTERONE. When we do go through menopause it is THIS hormone that bottoms right out, next to estrogen, which we still produce but in much lesser amounts of course. Soooooo .....when a women as young as your self is presenting with so many health complaints, it really seems logical that your core problems are probably stemming from your lack of sufficient levels of natural progesterone, which counters the adverse effects of estrogen. This will all become clear as you read Dr. Lee's book - after which you will have a darn good idea about what all to get tested for, and what you can begin to do, to start helping yourself back to good health.
    LOL - Anna
    (PS) If you are on any kind of prescription drugs - also bad news in far too many cases - you may want to pick up a copy of Dr. Earl Mindell's - Natural Alternatives to Prescription Drugs.
  5. Michigan Mom

    Michigan Mom New Member

    I am a little relieved to read your message. My ANA rates and cryoglobulin were normal. Pretty much all the blood work was completely normal. They tell me I don't have lupus, but my symptoms scream it. I'm tired. My feet are swollen, red and itchy. My face is red across the bridge of my nose to my hairline at the sides. I've followed their treatment plan with little/no improvement.

    Could it still be lupus, even if the bloodwork is ok? Is this why it could take so long to diagnose for some? Should I keep the same dr. or start over with a second opinion? Months of uncertainty and worry are making me crazy. Yesterday I decided to get a second opinion but I wonder if it will just postpone finding an actual diagnosis even more.

    What are you going to do?
  6. Milo83

    Milo83 New Member

    Hi & Welcome..I also don't post too much on this site, BUT when I read your symptoms, I had to reply..To me, it sounds like it could possibly be symtoms of some autoimmune disease...I'm just going to list some of the possiblities I was told and then you can check into it:
    (1) Was your thryoid checked lately? That can cause, hair loss, fatigue, even itching in some cases..
    (2) Ask your Dr. about CREST/Scleroderma..I have that, and believe it or not, there are a lot of drs. that are not familiar with CREST Syndrome..- Raynold's, thickening of skin, fatigue, hair loss, pneumonia, weight problems, and itching,joint pain, can all be symptoms..
    DID YOU EVER NOTICE LITTLE TINY RED SPOTS ON YOUR FINGERS OR HANDS, OR FACE????-another sign of Crest...
    (3) Since your mother has Lupus, you could very well have a form of Lupus..And you don't have to have a positive ANA to have Lupus, it just depends when the blood test is done..
    I have had many x-rays of my hands and wrists, but until my rhuemy put on the script to LOOK for signs of Crest, no one ever noticed it..These would be the calcium deposits in your hands, wrists, etc..
    Also your SED rate can vary, and it all depends on when your labs are done..Also a lot of things can change your sed rate, even the common cold..
    (4) Itching with no other diagnosis can be a sign of liver or kidney problems..I guess they have already checked that..

    My rhuemy also suspects Lupus with me, but he said that is one disease that really CAN take a long time to diagnose..He doesn't believe that Lupus Panel blood work gives true results..So it's just a wait and see situation with me..I do have Fibro, AIH (autoimmune hepatitis), CREST/Scleroderma which includes my Raynold's..I itch so bad, that I don't know what to do..In fact, I just started seeing my dermo and I'm in the process of getting light treatments to see if that helps..I scratch in my sleep till I bleed..
    With the Epstein Barr being positive, it could also be Chronic Fatigue..
    I'm sorry I went on so long, there are many possilbities here, but I would not give up, PUSH YOUR RHEUMY to check into Scleroderma and Lupus more..
    Wishing you the best.............Take Care....Donna