Discussions By Condition: I cannot get a diagnosis.

Deathly ill, no answers from Dr.

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Anonymous
  • October 18, 2010
  • 07:55 PM

At my last visit to the Dr., he said "There's obviously something very wrong with you, I just don't know what it is.".

I'm dying, unfortunately, and it seems there's nothing anyone can do. Let me start at the beginning so this makes sense. I'm a 31 y/o female, by the way.

I've been a sick person all my life. As in, I get sick with everything all year long. Since I was a baby I've had bronchitis at least twice a year, pneumonia now and then, and both followed by pleurisy half the time. I've got a cold or the flu more often than not. I've had MRSA at two different spots in my leg, recurring strep throat, abcessed teeth, and on and on.

I've always had less energy than most people, but everyone has always chalked it up to me being "lazy". But over the past 10 years my lack of energy has gotten much worse. I have days where I can barely walk from one room to the next, times when it feels I can barely move my arms and feel my legs will give out underneath me.

About 5 years ago my hair started falling out, and now so much of my hair is gone that I wear wigs because you can see my scalp from any angle. My skin is intensely dry, I get cold in 80 degree weather, and I often feel like there's a lump in my throat. Now to where it gets bad...

About a year and a half ago I woke up one morning and found I was completely insane. I was suddenly terrified that I was being drugged, either through my food, the air, or by touching "contaminated" things. I had never, ever had worried about such a thing before, and it was instantaneous, like someone had flipped a switch in my head. I began seeing a psychiatrist who told me it's very unusual for something like that to just pop up suddenly, unless it's caused by something physical. Because of the fear of food contamination, I can barely eat and have gone from 220 pounds down to my current 89 pounds (I'm 5'8).

My primary care doctor ran tests for everything, from thyroid panel to ANA (which came up positive but low, she he considered it a negative) and everything in between. What's odd is that even though I'm so clearly malnourished, my blood tests were all normal (aside from slight anemia, which I've had all my life). Electrolytes, potassium, you name it were all normal even though I probably consume less than 300 calories a day.

I'm convinced that whatever's made me sick my whole life, and has been getting progressively worse, is also what triggered the mental disorder, as is my doctor.

But what is it?

I have little time or hope left.

My Dr. suggested I see an internist next, but I can't afford that (I see that Dr. through a special program they have).

Does anyone have any ideas what could be wrong with me?

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  • At my last visit to the Dr., he said "There's obviously something very wrong with you, I just don't know what it is.".I'm dying, unfortunately, and it seems there's nothing anyone can do. Let me start at the beginning so this makes sense. I'm a 31 y/o female, by the way.I've been a sick person all my life. As in, I get sick with everything all year long. Since I was a baby I've had bronchitis at least twice a year, pneumonia now and then, and both followed by pleurisy half the time. I've got a cold or the flu more often than not. I've had MRSA at two different spots in my leg, recurring strep throat, abcessed teeth, and on and on. I've always had less energy than most people, but everyone has always chalked it up to me being "lazy". But over the past 10 years my lack of energy has gotten much worse. I have days where I can barely walk from one room to the next, times when it feels I can barely move my arms and feel my legs will give out underneath me.About 5 years ago my hair started falling out, and now so much of my hair is gone that I wear wigs because you can see my scalp from any angle. My skin is intensely dry, I get cold in 80 degree weather, and I often feel like there's a lump in my throat. Now to where it gets bad...About a year and a half ago I woke up one morning and found I was completely insane. I was suddenly terrified that I was being drugged, either through my food, the air, or by touching "contaminated" things. I had never, ever had worried about such a thing before, and it was instantaneous, like someone had flipped a switch in my head. I began seeing a psychiatrist who told me it's very unusual for something like that to just pop up suddenly, unless it's caused by something physical. Because of the fear of food contamination, I can barely eat and have gone from 220 pounds down to my current 89 pounds (I'm 5'8).My primary care doctor ran tests for everything, from thyroid panel to ANA (which came up positive but low, she he considered it a negative) and everything in between. What's odd is that even though I'm so clearly malnourished, my blood tests were all normal (aside from slight anemia, which I've had all my life). Electrolytes, potassium, you name it were all normal even though I probably consume less than 300 calories a day.I'm convinced that whatever's made me sick my whole life, and has been getting progressively worse, is also what triggered the mental disorder, as is my doctor. But what is it?I have little time or hope left.My Dr. suggested I see an internist next, but I can't afford that (I see that Dr. through a special program they have).Does anyone have any ideas what could be wrong with me?Have them check your B12 level for either B12 deficiency or Pernicious Anemia.
    Anonymous 42789 Replies
    • October 19, 2010
    • 02:09 AM
    • 0
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  • I would say the problem comes from your extremely malnourished frame. Who knows what came first- the mental illness or the weight loss. At this point it doesn't matter. Why haven't you been hospitalized and given tube feedings? You won't get better if your body is eating itself (which it is)You need to walk into an ER and tell the nurse that you are starving and cannot eat (because of paranoia) - you can get admitted. Seen by psych and internal medicine AND they will start you on feedings (via IV or NG tube) so you can regain weight. Everything else is secondary - you HAVE to regain the weight ASAP or you are right, you are going to die.
    Anonymous 42789 Replies
    • October 21, 2010
    • 05:04 AM
    • 0
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  • At my last visit to the Dr., he said "There's obviously something very wrong with you, I just don't know what it is.".I'm dying, unfortunately, and it seems there's nothing anyone can do. Let me start at the beginning so this makes sense. I'm a 31 y/o female, by the way.I've been a sick person all my life. As in, I get sick with everything all year long. Since I was a baby I've had bronchitis at least twice a year, pneumonia now and then, and both followed by pleurisy half the time. I've got a cold or the flu more often than not. I've had MRSA at two different spots in my leg, recurring strep throat, abcessed teeth, and on and on. I've always had less energy than most people, but everyone has always chalked it up to me being "lazy". But over the past 10 years my lack of energy has gotten much worse. I have days where I can barely walk from one room to the next, times when it feels I can barely move my arms and feel my legs will give out underneath me.About 5 years ago my hair started falling out, and now so much of my hair is gone that I wear wigs because you can see my scalp from any angle. My skin is intensely dry, I get cold in 80 degree weather, and I often feel like there's a lump in my throat. Now to where it gets bad...About a year and a half ago I woke up one morning and found I was completely insane. I was suddenly terrified that I was being drugged, either through my food, the air, or by touching "contaminated" things. I had never, ever had worried about such a thing before, and it was instantaneous, like someone had flipped a switch in my head. I began seeing a psychiatrist who told me it's very unusual for something like that to just pop up suddenly, unless it's caused by something physical. Because of the fear of food contamination, I can barely eat and have gone from 220 pounds down to my current 89 pounds (I'm 5'8).My primary care doctor ran tests for everything, from thyroid panel to ANA (which came up positive but low, she he considered it a negative) and everything in between. What's odd is that even though I'm so clearly malnourished, my blood tests were all normal (aside from slight anemia, which I've had all my life). Electrolytes, potassium, you name it were all normal even though I probably consume less than 300 calories a day.I'm convinced that whatever's made me sick my whole life, and has been getting progressively worse, is also what triggered the mental disorder, as is my doctor. But what is it?I have little time or hope left.My Dr. suggested I see an internist next, but I can't afford that (I see that Dr. through a special program they have).Does anyone have any ideas what could be wrong with me?And what Imunodeficiency?
    Anonymous 42789 Replies
    • October 21, 2010
    • 08:26 AM
    • 0
    Flag this Response
  • At my last visit to the Dr., he said "There's obviously something very wrong with you, I just don't know what it is.".I'm dying, unfortunately, and it seems there's nothing anyone can do. Let me start at the beginning so this makes sense. I'm a 31 y/o female, by the way.I've been a sick person all my life. As in, I get sick with everything all year long. Since I was a baby I've had bronchitis at least twice a year, pneumonia now and then, and both followed by pleurisy half the time. I've got a cold or the flu more often than not. I've had MRSA at two different spots in my leg, recurring strep throat, abcessed teeth, and on and on. I've always had less energy than most people, but everyone has always chalked it up to me being "lazy". But over the past 10 years my lack of energy has gotten much worse. I have days where I can barely walk from one room to the next, times when it feels I can barely move my arms and feel my legs will give out underneath me.About 5 years ago my hair started falling out, and now so much of my hair is gone that I wear wigs because you can see my scalp from any angle. My skin is intensely dry, I get cold in 80 degree weather, and I often feel like there's a lump in my throat. Now to where it gets bad...About a year and a half ago I woke up one morning and found I was completely insane. I was suddenly terrified that I was being drugged, either through my food, the air, or by touching "contaminated" things. I had never, ever had worried about such a thing before, and it was instantaneous, like someone had flipped a switch in my head. I began seeing a psychiatrist who told me it's very unusual for something like that to just pop up suddenly, unless it's caused by something physical. Because of the fear of food contamination, I can barely eat and have gone from 220 pounds down to my current 89 pounds (I'm 5'8).My primary care doctor ran tests for everything, from thyroid panel to ANA (which came up positive but low, she he considered it a negative) and everything in between. What's odd is that even though I'm so clearly malnourished, my blood tests were all normal (aside from slight anemia, which I've had all my life). Electrolytes, potassium, you name it were all normal even though I probably consume less than 300 calories a day.I'm convinced that whatever's made me sick my whole life, and has been getting progressively worse, is also what triggered the mental disorder, as is my doctor. But what is it?I have little time or hope left.My Dr. suggested I see an internist next, but I can't afford that I'm going to stop you right there.What you CANT afford to do is delay treatment any longer due to your financial situation. You won't have one soon if you keep that up.I wen't to the hospital recently, and there is this thing called a CHARITY! Please, have your doctor admit you to a well equip CLINIC, and have the tests run on you that will save your life!Now, if you want a possible diagnosis...CVID.Both males and females may have CVID. Some patients have symptoms in the first few years of life while many patients may not develop symptoms until the second or third decade (mental illness), or even later. The presenting features of most patients with CVID are recurrent infections involving the ears, sinuses, nose, bronchi and lungs. When the lung infections are severe and occur repeatedly, permanent damage to the bronchial tree may occur and a chronic condition of the bronchi (breathing tubes) develops, causing widening and scarring of these structures. This condition is known as bronchiectasis. The organisms commonly found in these infections are bacteria that are widespread in the population and that often cause pneumonia (Haemophilus influenzae, pneumococci, and staphylococci). The purpose of treatment of lung infections is to prevent their recurrence and the accompanying chronic damage to lung tissue. A regular cough in the morning that produces yellow or green sputum may suggest the presence of chronic infection or bronchiectasis (widening, scarring and inflammation of the bronchi).Patients with CVID may also develop enlarged lymph nodes in the neck, the chest or abdomen. The specific cause is unknown, but enlarged lymph nodes may be driven by infection, immune dysregulation, or both. Similarly, enlargement of the spleen is relatively common, as is enlargement of collections of lymphocytes in the walls of the intestine called Peyer’s patches.Although patients with CVID have a depressed antibody response and low levels of immunoglobulin in their blood (hypogammaglobulinemia), some of the antibodies that are produced by these patients may attack their own tissues (Positive ANA)(autoantibodies). These autoantibodies may attack and destroy blood cells (e.g. red cells, white cells or platelets). Although, most individuals with CVID present first with recurrent bacterial infections, in about 20% of cases the first manifestation of the immune defect is a finding of very low platelets in the blood, or perhaps severe anemia due to destruction of red cells. The autoantibodies may also cause arthritis or endocrine disorders, such as thyroid disease.Some patients with CVID who may not be receiving optimal immunoglobulin replacement therapy may also develop a painful inflammation of one or more joints. This condition is called polyarthritis. In the majority of these cases, the joint fluid does not contain bacteria. To be certain that the arthritis is not caused by a treatable infection; the joint fluid may be removed by needle aspiration and studied for the presence of bacteria. In some instances, a bacterium called Mycoplasma may be the cause and can be difficult to diagnose. The typical arthritis associated with CVID may involve the larger joints such as knees, ankles, elbows and wrists. The smaller joints (i.e. the finger joints) are rarely affected. Symptoms of joint inflammation usually disappear with adequate immunoglobulin therapy and appropriate antibiotics. In some patients, however, arthritis may occur even when the patient is receiving adequate immunoglobulin replacement.Some patients with CVID report gastrointestinal complaints such as abdominal pain, bloating, nausea, vomiting, diarrhea and weight loss. Careful evaluation of the digestive organs may reveal malabsorption of fat and certain sugars. If a small sample (biopsy) of the bowel mucosa is obtained, characteristic changes may be seen. These changes are helpful in diagnosing the problem and treating it. In some patients with digestive problems, a small parasite called Giardia lamblia has been identified in the biopsies and in the stool samples. Eradication of these parasites by medication may eliminate the gastrointestinal symptoms.Finally, patients with CVID may have an increased risk of cancer, especially cancer of the lymphoid system, skin and gastrointestinal tract.Patients with CVID do not have physical abnormalities unless complications have developed. Some patients with CVID may have an enlarged spleen and lymph nodes. If chronic lung disease has developed, the patient may have a reduced ability to exercise and decreased vital capacity (the maximum amount of air that can be taken into the lung voluntarily). Involvement of the gastrointestinal tract may, in some instances, interfere with normal growth in children or lead to weight loss in adults.Does that sound like you at all?You obviously need the following tests:Immunoglobulins, Serum QuantitativeMonoclonal Protein Detection Quantitation & Characterization, SPEP, IFE, IgA, IgG, IgM, SerumB-Cell Immunodeficiency ProfileLymphocyte Subset Panel 7 - Congenital ImmunodeficienciesStreptococcus pneumoniae Antibodies, IgG (14 serotypes)Diphtheria & Tetanus Antibodies, IgGDo not die because your afraid of debt. I'm telling you, CHARITIES are out there.
    keanhe 86 Replies
    • October 21, 2010
    • 10:44 PM
    • 0
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