Discussions By Condition: I cannot get a diagnosis.

no one can give me a concrete diagnosis

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: HeatherEve
  • August 23, 2007
  • 02:27 AM

Hello everyone- I am new to the group and am having a bad time right now, so I was hoping to pick the brains of all the forum users.

For the past 4 years, I have been through many tests and seen many doctors: general practitioners, gynecologists, rheumatologists, dermatologists, endocrinologists, GI's... everyone in the end gives me over to another "ologist" with no definitive diagnosis. Several things keep coming up in conversations with different doctors in relation to different symptoms: Lupus, thyroid and possible pituitary gland tumor.

Here is my list of symptoms- please let me know if any of you have this combination of symptoms or if you have any advice for me. Please note that these are not every day symptoms, they come and go... sometimes several symptoms at once, sometimes one at a time, sometimes for days or weeks, sometimes one day and it is gone. I tend to have periods of good health and periods of bad health where everything seems to go wrong at once.

* constipation, bloating, sever abdominal cramping
* gastritis
* pain in my stomach that feels like a combination of being punched in the stomach (muscles will not relax!) and hunger
* migraines (until the last one it was without aura, now it seems to be with aura. Before and during the last one I was very dizzy, disconnected, weak, nauseous and disoriented. My face became very swollen on the right side with the last one- the eye was almost swollen completely shut. They are becoming more frequent. Can't take Immitrex, due to the extreme tightening of my throat, but the doctor gave me Butalbital which at least takes the edge off.)
* occasional numbness in left side of face
* always very thirsty- drink water all day long
* nose sores in both nostrils
* mouth sores (cold and canker sores as well as an occasional swollen taste bud)
* fatigue
* malaise
* periods of depression
* low grade fevers from time to time with no explanation
* white coating on my tongue- always
*occasional metallic or sour taste that won't go away
* spots that come and go on my tonsils- not strep or infection according to PCP and ear, nose and throat dr
* swollen glands in my throat even when i am not sick
* hair loss!
* nails peel like bananas
* "body dandruff" - my skin flakes off like dandruff... every time I touch my skin during one of these times it snows! My clothes and sheets are covered in it when this happens.
* went 6 months with no period- even hormone given by my gyno did not initiate my menstrual cycle, she ended up putting me back on the pill (i am now off 8 months as per my endocrinologist)
* now that I am having a menstrual cycle- it only lasts a day or two tops
* left breast created a large amount of milk one time- prolactin tested ok, but T3 and T4 were out of whack
* joint pain and/or stiffness
* feet and ankles are always stiff and swollen in the morning
* numbness in pinky and ring finger of left hand (tested for carpal tunnel- dr says it is nerve damage instead)
* recurring YI's
* 3 kidney infections - one led to a systemic blood infection, the others were sever enough to cause fevers as high as 105 and require hospitalization
* severe attacks of gall bladder pain- no stones per ultrasound
* feet are always very cold- sometimes hands and nose are cold as well, even in the middle of summer.
* weight loss- i actually have dropped 5 pounds in a week and was down to 100 lbs. The pounds always come back eventually.
* periods of no appetite with rare bouts of ravenousness
* memory problems/cloudiness
* leukocytoclastic angiitis (inflammation of the blood vessels in my arms and legs- diagnosed after a biopsy. Possible autoimmune response as per dermatologist.)
* loss of libido
*diagnosed with a case of thyroiditis a year ago- thryoid was sore to the touch and slightly inflamed. I get reoccurances of this sensation from time to time and it is most usually coincides with other symptoms like fatigue
* Psoriasis. patchy, scaly rash that comes and goes on trunk, arms and legs.
* hyper-pigmentation on my face- dermatologist gave me bleaching cream which helps, but it always comes back as soon as i go in the sun even with sunblock on. (note: I am not on the birth control pill, have very pale skin and have never been pregnant, so i do not think it is melasma)
* sensitivity to cold - i am always cold and wear a sweater even in the summer- and i live in Georgia!
* headache if I lay down too long
* headache where back of head meets neck
* have had attacks of what i call "Mickey Mouse hands"- my hands feel very full and stiff as though they were inflated. Veins are very evident, but there is no visible swelling. Rheumatologist is at a loss as to the cause.
* lips are always dry and eyes are sometimes very dry
* After a 9-1-1 call, I was hospitalized on Halloween for severe dehydration after a very sudden (I was literally in the middle of putting on my makeup) attack of intense vomiting and diarrhea. Hospital physician said it could be gall bladder or infection. Rheumatologist thought it might be Parvo virus, but I tested negative for that. I was too weak to even walk on my own for about one week.


I wont list all the gazillion tests I have had, but here are a few:
* my ANA comes back equivocal (how i hate that word) more times than not
* tested negative for Celiac
* colonoscopy showed no signs of Crohn's disease, IBD, cancer, diverticulitis, etc. Doctor fell back on IBS as a possible cause for my abdominal issues.
* endoscopy/biopsy showed only a slight case of gastritis
* sometimes my T3, T4 and TSH levels are off- other times they are fine
* I have had multiple ultrasounds of my kidneys, gall bladder, uterus, ovaries, etc. nothing out of the ordinary shows up
* Appendix was removed in 1993
* The only medications i am on daily is Vitaplex ( a prescription vitamin), Miralax (a laxative) and Protinix for my gastritis. I also take daily: Biotin for my hair loss, Flaxseed oil for my IBS, papaya enzyme to help with digestion after each meal and magnesium to help with peristalsis. I take on a less than daily basis: Gas-X for my bloating, Butalbital for my headaches, Klonopin for my bouts of insomnia and anxiety.

I don't consume these because they kill my intestines: :eek:

Dairy/Casein
Wheat/Gluten
Red meat or pork
Fried foods
Raw fruits or veggies
Egg yolks
Carbonated beverages
ChocolateI exercise when I am not suffering from fatigue, drink on very rare occasion and I do not smoke.

Family history:

My mother has Crohn's disease, Rheumatoid arthritis, migraines.
My father's mother had Crohn's disease.
My sister has endometriosis.Ok- my apologies for the long post- I hope someone can help me! thank you all so very much for even looking at my post! Blessings to you all! :)

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11 Replies:

  • The symptoms of Addison's disease develop insidiously, and it may take some time to be recognised. The most common symptoms are fatigue, muscle weakness, weight loss, vomiting, diarrhea, headache, sweating, changes in mood and personality and joint and muscle pains. Some have marked cravings for salty foods due to the urinary losses of sodium.edit] Clinical signsOn examination, the following may be noticed:Low blood pressure that falls further when standing (orthostatic hypotension)Darkening (hyperpigmentation) of the skin, including areas not exposed to the sun; characteristic sites are skin creases (e.g. of the hands), nipples, and the inside of the cheek (buccal mucosa), also old scars may darken.Signs of conditions that often occur together with Addison's: goiter and vitiligoAddisonian crises are emergency situations. Also, have you been checked for diabetes? Also herpes simplex of the nose. Just like a cold sore.
    rad-skw 1605 Replies
    • August 24, 2007
    • 09:40 AM
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  • Thank you so very much for posting- i will most certainly look into Addison's disease - is there a specific test used for diagnosis? Interestingly enough..i do have low blood pressure and always get quite dizzy if i stand up to quickly. Had my first vertigo experience not too long ago- what a bizzarre sensation! I have been tested for diabetes, most recently 8/2, and I do not have that. Actually, blood sugar tends to be a little low- not dangerously low, but on the low side of normal. No history of diabetes in my family, only hypoglycemia. Thank you once again for your post. Your input is appreciated more than words can say.
    HeatherEve 3 Replies
    • August 24, 2007
    • 02:31 PM
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  • Try looking up hereditary angioedema.
    aquila 1263 Replies
    • August 24, 2007
    • 03:59 PM
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  • * lips are always dry and eyes are sometimes very dry * "body dandruff" - my skin flakes off like dandruff... I think ONE of your issues may be an autoimmune disease called Sjogren's syndrome due to what you said above..and the dry skin you have. "Sjögren’s (SHOW-grins) syndrome is a disease that affects the glands that make moisture. It most often causes dryness in the mouth and eyes. It can also lead to dryness in other places that need moisture, such as the nose, throat, and skin." Chronic Fatigue syndrome can cause many of your symptoms along with increased prolactin and thirst. Thou I aint sure if it sounds as if you have that.
    taniaaust1 2267 Replies
    • August 25, 2007
    • 01:46 PM
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  • Heathereve...I had posted this in a previous thread I had written. Truth is, many dis-eases have a common origin. No matter what your disease is "called", please know that help is available.I recommend finding a local NAET/Bioset practicioner in your area and go.It works and I am not the only one in this forum recommending it...just for that reason,,,It works.I have CFS but now my symptoms are almost completely resolved after just 6 treatments. I have CFS. I assumed, at first that everyone must have CFS, for most have many of my symptoms. Upon realizing that MYCOPLASMA is responsible for many diseases, including CFS, I have realized infact that alot of you are having symptoms of Gulf War Syndrome, Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Fibromyalgia, Lyme Disease, Rheumatoid Arthritis, Systemic Lupus Erythematosus, Scleroderma, Sjogren's Syndrome, Amyotrophic Lateral Sclerosis, Multiple Sclerosis, Cystic Fibrosis, Asthma, Respiratory Distress Syndrome, Pneumonia, Bronchitis, Inflammatory Bowel Disease(Chron's Colitis), Sarcoidosis, Wegener's Disease, Kikuchi's Disease, Leukemia, Alzheimer's Disease, Autism, Infertility, Stevens-Johnson Syndrome, and Acquired Immune Deficiency Syndrome, Hypercoagulation, Heart Disease, Stroke and Cancer. I know endometriosis is included too for it is an "AUTOIMMUNE " illness.It is also said to be responsible for Parkinson's Disease.MYCOPLASMA is responsible for all of these diseases. There are PCR tests available for mycoplasma but the traditional treatment is long term antibiotics which often do more harm than good. Please consider NAET/Bioset for it is non-invasive, doesn't hurt and only helps. Best wishes Heather,,,mommy cat
    mommy cat 1654 Replies
    • August 25, 2007
    • 11:54 PM
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  • Chronic Fatigue syndrome can cause many of your symptoms along with increased prolactin and thirst. Taniaaust, It appears that you finally have seen what is going on here? I am impressed...and I agree. "....Thou I aint sure if it sounds as if you have that...." ....but I wouldn't be so sure about the above comment. Fresh from the shopping-cart.
    Anonymous 42789 Replies
    • August 26, 2007
    • 05:18 AM
    • 0
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  • the white coated toungue sounds like a yeast problem. google three-lacprolactin levels vary per your menstrural cycle as well as other hormones. you should have levels redrawn and try to record how you feel daily with a journal what you ate etc to see if maybe your levels are peaking at some point with how you feel.
    Anonymous 42789 Replies
    • August 26, 2007
    • 08:59 AM
    • 0
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  • What Can NAET treat? NAET treats: Acne, ADD/ADHD, anxiety attacks, arthritis, asthma, autism, backache, bad breath, blood pressure problems, bronchitis, candida, chemical sensitivities, chronic fatigue, colitis, constipation, cough, depression, diarrhea, dry eyes, dyslexia, ear infections, eating disorders, emotional problems, eczema, environmental allergies, excessive appetite, falling hair, fibromyalgia, flatulence, food cravings, frequent colds, frequent infections, gallstones, general itching, hay fever, headaches, heartaches, hemorrhoids, herpes, hives, hormones imbalances, hyperactivity, hypoglycemia, immune defiency disorders, indigestion, insomnia, irritable bowel syndrome IBS, kidney disease, knee pains, leaky gut syndrome, lock jaw, lupus, menopausal syndrome, migraines, mood swings, myalgic encephalomyelitis, nervous stomach, night sweats, overeating, O.C.D., parasitic infestations, phobias, poor appetite, poor memory, post nasal drip, premenstrual syndrome, psoriasis, psychological disorders, restless leg syndrome, rheumatoid arthritis, ringworm, sciatica pains, sea sickness, shingles, sinusitis, stiff neck, thyroid problems, varicose veins, vertigo, weight problems, etc, etc, etc.....NAET treats addiction to: Smoking, alcohol, carbohydrates, coffee, drugs, food, etc, etc, etc....NAET treats allergies to: Chemicals, chemotherapy, cold/heat/wind, computer, cosmetics, fungus, latex, milk products, mould, peanuts, penicillin, pets & animals, plastics, prescription drugs, radiation, shellfish, the sun, your clothing etc, etc, etc.....
    EmilyMcN 67 Replies
    • August 26, 2007
    • 09:41 AM
    • 0
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  • NAET/Bioset treated me!! My symptoms were too many to list. Now, I am headed back to work. I HIGHLY recommend it to everyone. See how much better you feel after just the first 3 treatments. My response to this therapy was overwhelming.Best of luck to you all.....mommy cat:)
    mommy cat 1654 Replies
    • August 26, 2007
    • 02:04 PM
    • 0
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  • Thank you all so very much for sharing your experiences and ideas... I was feeling ok for a few days, almost "normal"... now i am feeling run down with a headache, slight fever and my joints are stiff and sore *sigh!* Could be worse, so I will not complain. :) The symptoms of Addison's disease develop insidiously, and it may take some time to be recognised....I will have my Cortisol levels checked next time and will look at my medical records (i have copies) to see if it has ever been run before. I will talk to my new doctor about the ACTH Stimulation Test as well. I was actually supposed to have an MRI (not CT scan) to check my pituitary a few months ago, but the insurance did not want to cover it and my former endocrinologist would not push for it. Thank you for all your help! Try looking up hereditary angioedema. I found this site helpful in regards to that: http://www.nlm.nih.gov/medlineplus/ency/article/001456.htm Thank you for the suggestion- I will continue to research this further and will discuss this with the new dr (when i find him/her) as well. I think ONE of your issues may be an autoimmune disease called Sjogren's syndrome due to what you said above..and the dry skin you have...Chronic Fatigue syndrome can cause many of your symptoms along with increased prolactin and thirst. The dry skin comes in cycles from totally normal to leaving an embarrassing trail of snow wherever i go. My ANA is always a tad odd, so i will look into this as well. As far as CFS- is the diagnosis simply a matter of ruling out other illnesses? the white coated toungue sounds like a yeast problem. I will look into this- i knew someone who had a yeast problem, i will try to pick her brain as well. mommycat and emilymcn: I will research NAET more online, but have to admit i am wary of "cure-all"'s. I have done energy work, acpressure, chiropractic and kineisiological therapies in the past when i was younger. Perhaps it is time to revisit them.
    HeatherEve 3 Replies
    • August 31, 2007
    • 10:17 PM
    • 0
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  • It appaers I'm in the same boat as you. I was diagnosed with sorjensen but it's a special gift you get when diagnosed with lupus SLE. I have thyriod disease that has gone out of control and high 128 protacin level. My Doctor said, I'm living in some toxic enverirment. Now I have foound mold in my appartment I hope I find the answers soon I'm after I'm going to die.
    Anonymous 42789 Replies
    • December 28, 2010
    • 07:22 AM
    • 0
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