Discussions By Condition: I cannot get a diagnosis.

hypergammaglobulinemia

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Yannob
  • April 15, 2009
  • 00:43 AM

Hi,

I have been having trouble getting a diagnosis and it really has been affecting me for a long time. I currently am diagnosed with SLE Lupus, I always believed that it caused my rashes.

For as long as I can remember...probably since I was around 6ish or 7 I have always had these persistent rashes. They were bright red, pin *****s would turn purple then disappear. But then they got worse and happen so frequent that it was everyday. The pin *****s clustered caused the skin the inflamm and by the time I was 16 I seriously couldn't remember the last time I saw the colour of my skin below my thighs. They would swell up until it looked like I had pig legs then eventually appear as swollen bruises. The rashes would create a numbing pain accompanied with a discomforting tickling sensation, they would feel swollen before appearing so.

When I was 16 it had spread up to my upper body and my forearms. Apply pressure, stress, tiredness, strain accelerate and worsen the condition, otherwise it happens anway. It can get to the point where I have difficulty moving my limbs or using my hands until the next day where it is less serious.

I am 22 now, and ever sense being diagnosed with lupus and placed on steriods it appeared the rashes were undercontrol. They still persist around every other day but no where near as serious as before. But recently I learned that my rashes had nothing to do with lupus but they were certain it had to do with my immune system. They gave me a term. Hypergammaglobulinemia. And told me that it is generally not treated and a mere asethetic symptom.

So I try to look up Hypergammagloblinemia and I can't find anything that is even similar to me, or anything. I feel like I am back to square one. I know they were more concerned with me having a kidney failure than dealing with a rash, but there are many points in my life where I refuse to look at my body.

Yes I wear pants, long sleeves and everything now, and try to behave like I am fine. But when I am made to do yoga at my theatre class which is supposed to feel relaxing all I can feel are the tingling, the iching spreading on me. I can't walk, stand, sit, carry light things even a purse for long periods of time before feeling it "activating".

Does anyone have any ideas?

Yan

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  • Hi,I have been having trouble getting a diagnosis and it really has been affecting me for a long time. I currently am diagnosed with SLE Lupus, I always believed that it caused my rashes.For as long as I can remember...probably since I was around 6ish or 7 I have always had these persistent rashes. They were bright red, pin *****s would turn purple then disappear. But then they got worse and happen so frequent that it was everyday. The pin *****s clustered caused the skin the inflamm and by the time I was 16 I seriously couldn't remember the last time I saw the colour of my skin below my thighs. They would swell up until it looked like I had pig legs then eventually appear as swollen bruises. The rashes would create a numbing pain accompanied with a discomforting tickling sensation, they would feel swollen before appearing so.When I was 16 it had spread up to my upper body and my forearms. Apply pressure, stress, tiredness, strain accelerate and worsen the condition, otherwise it happens anway. It can get to the point where I have difficulty moving my limbs or using my hands until the next day where it is less serious.I am 22 now, and ever sense being diagnosed with lupus and placed on steriods it appeared the rashes were undercontrol. They still persist around every other day but no where near as serious as before. But recently I learned that my rashes had nothing to do with lupus but they were certain it had to do with my immune system. They gave me a term. Hypergammaglobulinemia. And told me that it is generally not treated and a mere asethetic symptom.So I try to look up Hypergammagloblinemia and I can't find anything that is even similar to me, or anything. I feel like I am back to square one. I know they were more concerned with me having a kidney failure than dealing with a rash, but there are many points in my life where I refuse to look at my body.Yes I wear pants, long sleeves and everything now, and try to behave like I am fine. But when I am made to do yoga at my theatre class which is supposed to feel relaxing all I can feel are the tingling, the iching spreading on me. I can't walk, stand, sit, carry light things even a purse for long periods of time before feeling it "activating".Does anyone have any ideas?YanPlease google a DR. that specialises in hypergammaglobulinemiaand get a referral. I was struggling with allergists and immunologistsin the end I am going to see a Hematologist.I hope this helps. Sorry you feel so much pain. I have difficulty going out in extreme temperatures and have simular reactions, It could be a sensitivity to certain fabrics in your clothing as well. I know latex and formaldhyde fabrics like polyesters and acrylics can also effect the skin.Look for a Hematologist and wear more cotton.Peace
    Anonymous 42789 Replies
    • December 23, 2009
    • 01:00 PM
    • 0
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