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New Member
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Join Date: Aug 2008
Posts: 1
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New Member
Join Date: Aug 2008
Posts: 1
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My Son was Diagnosed with Erythromyalgia 20 years ago....
[SIZE=3] Hello,
My name is Karen Gray My Son was diagnosed with Erythromyalgia 20 years ago....he was 7 years old. Our experience was very similar to yours. We were sent to Children's hospital in Birmingham Alabama. They were bringing in doctors by the droves....and were telling my husband and me that our son had mental problems and he was having a psychosomatic disorder as well. I begged for a Neurologist and he came in and had read an article a few weeks earlier on Erythromyalgia. I told him that the only relief we were getting was for Kenny to soak in hands and feet in cold ice water. He came back a few hours later with the article and 3 other doctors. They knew it was Erythromyalgia but did not know how to treat it. After several bizarre tests and experimental drugs my husband and I were begging our family doctor to get us out of the hospital so that I could find treatment for our son. It was a process but we finally did get released. We found a doctor in Tuscaloosa, Alabama and immediately told me that all Kenny needed was a steroid. We put him on steroids and in two months he was completely back to normal.
If you want to talk to me personally please send me a number where you can reached to and I will be happy to talk to you. I will certainly keep your daughter in my prayers. Karen Gray
Quote:
Originally Posted by bellndom
My 14 year old daughter has recently been diagonosed with erythromyalgia.
Last year she lost her ability to walk at a normal gait.
She has burning pain on the bottom of both of her feet.
Her fist diagnosis at UCSF Children's was CD (Conversion Disorder: a Psychosomatic disorder), because they (UCSF) did not take the time to research. This drove us crazy trying to figure out what the "stressor" made her lose the ability to put weight on the soles of her feet.
Next we went to Shriner's in Sacramento who had the quick diagnosis of RSD. They said there is no treatment and it will eventually leave her body.
I would not settle for this diagnosis because she had the burning pain on both of her feet and the only pain relief she recieved was from soaking her feet in cold water.
She is Now at Lucile Packard children's hospital in Stanford with the Pain Clinic team. They diagnosed her with Erythromyalgia. She has been there for three weeks with an epidural catheter.
Any one out there that has experienced this rare disorder?
Thank You.
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Last edited by Curious; 08-21-2008 at 09:00 PM.
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