Discussions By Condition: I cannot get a diagnosis.

I have been sick for years and have no diagnosis.

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: elenam
  • December 22, 2010
  • 06:04 AM

Please help I have been sick for years and cannot get help. Doctors won’t take me seriously and have even laughed at me when I have told them that I am dying. I started having pain in my joints at 16, and have very slowly gotten worse. By the time I was a junior in college I could barely walk to class. Through diet and exercise changes I have gotten much better in many ways- but every day is still a challenge for me. Doctors did not listen to me when I was very underweight and ill. Now they really don’t listen to me.
I am 5’ 10’’ and 125 pounds, 25 year old female.
I am in mental decline, my memory is going and often I can’t remember what I was just thinking or what I had gotten up to get.
I am very clumsy, and go to pick up pens and throw them across the room. Sometimes when I write the pen jerks.
I was vanishing and had severe diarrhea problems for a year a year and a half ago. I went gluten free and have put on a small amount of weight after a year and a half. I went from 112 to 125.
An MRI showed fluid in my joints, and my joints crack frequently throughout the day. Sometimes when I walk my knees crack many times in a row, very loudly. I have a great deal of joint pain, especially in the cold.
I have polycystic ovaries and have had my left ovary removed, later a cyst ruptured on the right ovary but it did not have to be removed.
My circulation is very poor, and I have many spider veins.
I have 20/200 vision with a stigmatism in my right eye.
My right shoulder blade doesn’t fall right and my spine is slightly curved.
The right side of my body is very slightly smaller than the left. Right foot is slightly smaller, right leg is shorter to the extent that when I stand my hip fat lands different. I have large tabs on my ears but not too abnormally large. When I was a small child and learning to walk I had to wear a brace since my leg turned in. I have incredibly high arches on my feet, and am knock-kneed.
My father’s father died of something involving arthritis that eventually got to his nervous system. He was diagnosed with “Rheumatis”. My dad’s cousin died from a curved spine when he was very young. My mother’s mother had lupus.
It was thought that I had rheumatoid arthritis, then lupus, then neither. I was tested in many ways looking for things like MS and Lupus, and the results seemed contradictory and not strong enough to point to any one thing. I was put on Prednisone and got sicker.
I don’t have health insurance and cannot afford to go from doctor to doctor hoping that they will help me. What I am looking for a doctor in the Midwest who will actually take the time to help me. I am supposed to be in the prime of my life and I feel like I am 60. I am afraid that I will never get to have the perfect family I have always wanted. I’m afraid to date because I feel like my health is just baggage and I am probably not going to be able to have children. Surely with today’s technology there is a way to help me improve my life. I exercise regularly and follow a strict healthy diet including lots of vitamins. I just want so badly to feel young again.

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  • Check out "failsafe diet" on the internet. I had heard lots of similar problems fixed by that diet. good luckPlease help I have been sick for years and cannot get help. Doctors won’t take me seriously and have even laughed at me when I have told them that I am dying. I started having pain in my joints at 16, and have very slowly gotten worse. By the time I was a junior in college I could barely walk to class. Through diet and exercise changes I have gotten much better in many ways- but every day is still a challenge for me. Doctors did not listen to me when I was very underweight and ill. Now they really don’t listen to me. I am 5’ 10’’ and 125 pounds, 25 year old female.I am in mental decline, my memory is going and often I can’t remember what I was just thinking or what I had gotten up to get. I am very clumsy, and go to pick up pens and throw them across the room. Sometimes when I write the pen jerks.I was vanishing and had severe diarrhea problems for a year a year and a half ago. I went gluten free and have put on a small amount of weight after a year and a half. I went from 112 to 125.An MRI showed fluid in my joints, and my joints crack frequently throughout the day. Sometimes when I walk my knees crack many times in a row, very loudly. I have a great deal of joint pain, especially in the cold. I have polycystic ovaries and have had my left ovary removed, later a cyst ruptured on the right ovary but it did not have to be removed. My circulation is very poor, and I have many spider veins.I have 20/200 vision with a stigmatism in my right eye.My right shoulder blade doesn’t fall right and my spine is slightly curved.The right side of my body is very slightly smaller than the left. Right foot is slightly smaller, right leg is shorter to the extent that when I stand my hip fat lands different. I have large tabs on my ears but not too abnormally large. When I was a small child and learning to walk I had to wear a brace since my leg turned in. I have incredibly high arches on my feet, and am knock-kneed.My father’s father died of something involving arthritis that eventually got to his nervous system. He was diagnosed with “Rheumatis”. My dad’s cousin died from a curved spine when he was very young. My mother’s mother had lupus.It was thought that I had rheumatoid arthritis, then lupus, then neither. I was tested in many ways looking for things like MS and Lupus, and the results seemed contradictory and not strong enough to point to any one thing. I was put on Prednisone and got sicker.I don’t have health insurance and cannot afford to go from doctor to doctor hoping that they will help me. What I am looking for a doctor in the Midwest who will actually take the time to help me. I am supposed to be in the prime of my life and I feel like I am 60. I am afraid that I will never get to have the perfect family I have always wanted. I’m afraid to date because I feel like my health is just baggage and I am probably not going to be able to have children. Surely with today’s technology there is a way to help me improve my life. I exercise regularly and follow a strict healthy diet including lots of vitamins. I just want so badly to feel young again.
    Anonymous 42789 Replies
    • January 3, 2011
    • 00:16 PM
    • 0
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  • Dont be afraid anything!You will be allright, you should believe in it.Are you diagnosed with bursitis as well as arthritis or may be (osteo)arthrosis?What is your official diagnosis?
    SunScript 8 Replies
    • January 4, 2011
    • 01:16 PM
    • 0
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  • My family doctor thought that I had RA after I tested positive for lupus. She sent me to a rheumatologist who thought that I was beginning to get lupus. She gave me an MRI not believing the blood work that showed me as having dead antibodies in my blood (apparently the sign of arthritis at work). She was shocked to find that I had signs of arthritis in my hands (the only part MRI'ed) and that there was a lot of fluid in my joints. Then she just gave up and said it was probably lupus and didn't do anything else since I was dropped off my mom's insurance while I was still in college. I moved back home after school and went to another rheumatologist who tried to get me to take vicodin prescriptions. Then she told me my results weren't strong enough to get a specific diagnosis and that I would be fine but was I sure that I didn't just want an obscene amount of pain killers that I couldn't function on?
    Anonymous 42789 Replies
    • January 4, 2011
    • 05:09 PM
    • 0
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  • Check out the Mayo Clinic, the offer charity care and there is a way to get free flights as well once the accept you. You can self refer yourself and then they will need your doctors to send their records. I am in the process myself. Hang in their your not alone. I have many diagnosis but think the main problem has been missed my whole life.
    jj4christ 6 Replies
    • January 4, 2011
    • 08:01 PM
    • 0
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  • I completely understand although I have got other symptoms to you I have been ill for 4 years and I feel in the prime of my life I have no life!! I struggle to get through every day and I come home and sleep. I dont have a social life anymore and like you can just about fend for myself let alone think about starting a relationship. It has caused me to have depression and to be in the pain and discomfort I am in I sometimes dont think I should be leading a normal life but I should be in hospital.
    Anonymous 42789 Replies
    • January 4, 2011
    • 09:14 PM
    • 0
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  • Some of the things you describe sound like problems wwith your genes. If you go to Mayo, ask to se a geneticist.
    aquila 1263 Replies
    • January 6, 2011
    • 07:43 PM
    • 0
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