anne is asking
03-29-2005, 12:20 PM
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
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
Sponsor
Kathim
03-30-2005, 02:02 PM
Anne........
I personally do not know what this disorder is but there is a renowned expert Neurologists on all neuropathys and other disorders in the Los Angeles area affiliated I believe with USC.......his name is Dr King Engle. If hios staff finds your situation to be unique enough they will agree to see you.
Good luck
Kathi
I personally do not know what this disorder is but there is a renowned expert Neurologists on all neuropathys and other disorders in the Los Angeles area affiliated I believe with USC.......his name is Dr King Engle. If hios staff finds your situation to be unique enough they will agree to see you.
Good luck
Kathi
anne is asking
03-31-2005, 12:19 AM
Hi Kathy, Thanks for the information. I tried looking up this doctor but have had no luck. Which is his last name, King or Engle? Thanks again, Anne
Kathim
03-31-2005, 10:42 AM
Anne........
His name is Dr. King Engle......you should be able to get the number by calling 1-213-555-1212 (directry assistence for the Los Angeles area)
If that does not work.......please do a post and I will try and locate the # for you.
Kathi
His name is Dr. King Engle......you should be able to get the number by calling 1-213-555-1212 (directry assistence for the Los Angeles area)
If that does not work.......please do a post and I will try and locate the # for you.
Kathi
anne is asking
03-31-2005, 02:28 PM
Kathi, you're so sweet. I did try the information number and no luck, so if you do have his number that would be great! Thanks for everything! Anne
Kathim
03-31-2005, 05:19 PM
OK Here goes :
W.King Engel M.D.
Professor of Neurology & Pathology
Director Of Neuromuscular Center
USC School Of Medicine
Neuromuscular Center
637 South Lucas Ave
Los Angeles, California 90017
Phone 213-743-1612
I hope this helps. He's "THE MAN" when it comes to this stuff !!!!!!!!
Good Luck
Kathi
W.King Engel M.D.
Professor of Neurology & Pathology
Director Of Neuromuscular Center
USC School Of Medicine
Neuromuscular Center
637 South Lucas Ave
Los Angeles, California 90017
Phone 213-743-1612
I hope this helps. He's "THE MAN" when it comes to this stuff !!!!!!!!
Good Luck
Kathi
anne is asking
04-01-2005, 09:31 AM
Hi Kathi,
I think I messed up and posted a "quick reply", whatever that is, all I know is it didn't show up on the board. Anyhow, I am having difficulty getting Dr. King Engle's number, if you have it I would be so grateful if you shared it with me. Thanks again for everything! Anne
I think I messed up and posted a "quick reply", whatever that is, all I know is it didn't show up on the board. Anyhow, I am having difficulty getting Dr. King Engle's number, if you have it I would be so grateful if you shared it with me. Thanks again for everything! Anne
Kathim
04-01-2005, 11:34 AM
I posted information .........do u see it ????????
Kathi
Kathi
anne is asking
04-01-2005, 12:09 PM
Ok, yes I do, THANK YOU SO MUCH !!!! Anne
Kathim
04-02-2005, 05:12 PM
anne.........
keep me udated on your progress wth this
keep me udated on your progress wth this