It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Rare Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 03-28-2005, 01:37 PM   #1
Junior Member
(female)
 
Join Date: Dec 2004
Posts: 36
anne is asking HB User
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. 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!
HELP!, WHAT IS THIS?
Anne

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

Anne,
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!
hrtofluv

 
Sponsors Lightbulb
   
Old 05-06-2005, 08:11 PM   #3
Member
(male)
 
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.


Eric

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
teen needs advice on oily stools..and eating disorder?? fluffylemon Bowel Disorders 3 04-27-2010 01:56 AM
A Rare Disorder that can affect the ear californiasunflower Inner Ear Disorders 1 03-09-2008 08:17 PM
Angiotensin receptor blockers and myocardial infarction ACE28 High & Low Blood Pressure 14 11-15-2005 08:46 AM
Rare skin disorder info requested PICKKLES Rare Disorders 3 04-14-2005 10:29 AM
Rare Receptor Disorder anne is asking Neuropathy 9 04-02-2005 01:12 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 07:25 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!