| Rare Receptor Disorder
Hi,
After many years of investigating the various differences of my son, we now believe this to be a rare receptor disorder. 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!
HELP!, WHAT IS THIS?
Anne
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