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dennykat Message
3 Jun 2009, 04:06 PM

Amn is slowly disconnecting me from my life. Is there anything new coming that could make a difference??
Fernbird22 Message
4 Jun 2009, 06:11 AM

Hi Denny, since my two grnadsons have come along my family have been brought up to speed on where research is at with these illnesses. Forgive me if nothing I mention here is new to you, but have learned about the differences in forms of ALD the alarm bells went off about Addison's and the need to manage cortisol levels with ALD as Addison's is potentially fatal if left unmanaged. My grandson Daniel broke the mold when he became symptomatic at 16 months. He had his first seizure at 11months, the result of a temperature that went out of control. We didn't know he was ALD+ve at the time, as it (supposedly) wasn't a priority at that age. The Kennedy Kreiger Institute has an AMN trial going at the moment. And although I might argue the against merits of the linear scientific methodology being applied in cases of life-threatening illnesses, they as well as the Myelin Project, etc would be worth making enquiries with. Try this links or I think I've read discussions on AMN in the ALD and Addisons links on rareshare as well. Anyway, good luck and I hope your symptoms settle down. I've looked you up on your myspace link and I must say your music is heaven-sent, you are very fortunate, talented and are surrounded by all the beauty this world has to offer. Take care and best wishes. Bxx