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rare receptor disorder

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Old 03-28-2005, 01:37 PM   #1
anne is asking
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Join Date: Dec 2004
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anne is asking HB User
rare receptor disorder

After many years of investigating the various differences of my son, we now believe this to be a rare receptor disorder. Over the years, my son has had unusual and extreme side effects from different medications, he has a sleep disorder, ADHD of combined type and enuresis. He has mulitple learning disabilities and a memory problem (both of these are presented inconsistantly. For the last several years, his hands/arms and legs/feet turn purple or red. This year is quite severe. He turns so dark that the calleses on the palm of his hand and a scar turn black.
We have taken him to a cardiologist who says his color change is not a issue from his heart. We then went to a rhuematologist, who tested his blood for everything under the sun, sent us to a opthamologist for a visual fields test and a pulmonologist for a pulmonary function test. All were within normal limits. They have ruled out Raynauds and have decided it is a rare receptor disorder.
I do not know what a receptor disorder is, although they feel it is quite possible that the lifetime of my sons medical events could all be connected to this receptor disorder.
Anyone that has any information on this, or has this disorder, or could help us find a specialist of receptor, any information at all, would be greatly appreiated!

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Old 04-28-2005, 09:59 AM   #2
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Join Date: Jul 2003
Location: Oak Ridge, TN, USA
Posts: 648
hrtofluv HB User
Re: rare receptor disorder

Do a search for clinical trials - NIH and Duke's on the east coast are constantly seeking participants in trials. It was in one of these trials - that I finally got my diagnosis. Noone in the US could figure it out, so they finally sent it to Italy. A pathologist there finally gave me my diagnosis.
Good Luck!

Old 05-06-2005, 08:11 PM   #3
Join Date: Apr 2005
Posts: 79
je46324 HB User
Re: rare receptor disorder

sounds like it might be hormone problems. I am really curious since my family has a genetic disorder where one of their thyroid hormone receptors are mutated, I am curious as to what your doc comes up with, just off hand I would think the andrenals.


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