Discussions By Condition: I cannot get a diagnosis.

Any thoughts?

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: AlyDawn1990
  • August 21, 2009
  • 04:44 PM

I want to try to make this as short as possible.
When I was eleven years old(I am now nineteen). I had a 105 fever, a 'rash' all over my body, and I couldn't get out of bed. I went to a Children Hospital from the beginning of 2001 to 2003. And still was never diagnosed. In 2001 they did a biopsy on the rash and it came back normal. I stopped going because I became frustrated with all they wanted to do is take blood out of me and send me home. I ended up going to a Rheumatologist here in 2007 and all the blood tests came back normal. They checked my heart and it was normal.

They rolled out Lupus, Rheumatoid Arthritis, Lyme disease.

Some of my symptoms:
-Sensitivity to sun/heat(if I am out in the sun for any amount of time I get very ill, sick to stomach, headache, feel like I have to pass out)
-Headaches. I remember at the age of four I started to get headaches. They can last for days.
-Joint pain in right hand
-Joint pain in right ankle
-Time I did have the rash it was red, and purple in the center. hurt to touch. Was on arms, and legs. And only one time on the face. The time I had it on the face it lasted for a few months.
-Joint pain in hands in the morning(Can't grip to open anything) Lasts for a few hours.
-Joint/muscle pain/tingling/numbness over body, occurs when I have any amount of stress. Or pops up randomly.
-Under a lot of stress the fingers bend outwards as far as possible and unable to close hands.
-Upset(depressed/anxious/stressed) my body basically shuts down and I am physically unable to get myself out of bed.
-Lymph nodes in neck get swollen, as well under the armpit and my sides.
-I got my tonsils and adenoids removed when I was six because of strep throat, but they grew back.
-My mother and grandmother suffer from the same thing.

All of these have been occurring since 2001 besides the rash. The past few weeks have been killing me with these symptoms.

Wanted to give as much detail as possible.

Does anyone else have this problem? can anyone give any advice or suggestions?


Thank you.

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3 Replies:

  • I want to try to make this as short as possible.When I was eleven years old(I am now nineteen). I had a 105 fever, a 'rash' all over my body, and I couldn't get out of bed. I went to a Children Hospital from the beginning of 2001 to 2003. And still was never diagnosed. In 2001 they did a biopsy on the rash and it came back normal. I stopped going because I became frustrated with all they wanted to do is take blood out of me and send me home. I ended up going to a Rheumatologist here in 2007 and all the blood tests came back normal. They checked my heart and it was normal.They rolled out Lupus, Rheumatoid Arthritis, Lyme disease. Some of my symptoms:-Sensitivity to sun/heat(if I am out in the sun for any amount of time I get very ill, sick to stomach, headache, feel like I have to pass out)-Headaches. I remember at the age of four I started to get headaches. They can last for days.-Joint pain in right hand-Joint pain in right ankle-Time I did have the rash it was red, and purple in the center. hurt to touch. Was on arms, and legs. And only one time on the face. The time I had it on the face it lasted for a few months.-Joint pain in hands in the morning(Can't grip to open anything) Lasts for a few hours.-Joint/muscle pain/tingling/numbness over body, occurs when I have any amount of stress. Or pops up randomly.-Under a lot of stress the fingers bend outwards as far as possible and unable to close hands.-Upset(depressed/anxious/stressed) my body basically shuts down and I am physically unable to get myself out of bed.-Lymph nodes in neck get swollen, as well under the armpit and my sides.-I got my tonsils and adenoids removed when I was six because of strep throat, but they grew back.-My mother and grandmother suffer from the same thing.All of these have been occurring since 2001 besides the rash. The past few weeks have been killing me with these symptoms.Wanted to give as much detail as possible.Does anyone else have this problem? can anyone give any advice or suggestions?Thank you.Erythropoietic protoporphyria? a million things can cause all of those things you stated... not sure!
    skillz 2 Replies
    • August 21, 2009
    • 11:16 PM
    • 0
    Flag this Response
  • Maybe check out Fabrys Disease or Kawasaki disease. Here are some links: http://www.wrongdiagnosis.com/f/fabrys_disease/intro.htm http://www.wrongdiagnosis.com/k/kawasaki_disease/intro.htm These are only suggestions for research purposes.
    gr8tful 175 Replies
    • August 22, 2009
    • 06:47 AM
    • 0
    Flag this Response
  • Maybe check out Fabrys Disease or Kawasaki disease. Here are some links: http://www.wrongdiagnosis.com/f/fabrys_disease/intro.htm http://www.wrongdiagnosis.com/k/kawasaki_disease/intro.htm These are only suggestions for research purposes.Thank you so much for the suggestions.
    AlyDawn1990 1 Replies
    • August 23, 2009
    • 03:34 AM
    • 0
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