There is also frustration in the fact that I have sent dozens of emails and left voice messages for the company that is doing the Spraygel (Confluent Medical) I finally today did get a voice mail back from their Clinical person (Eric) but he did not say much of anything except that there is one trial going on but it's not approved in the US (yes I knew that much on my own) but I called him back and left another message asking for anything else he can share with me - I will of course keep the message board posted if I do find out anything.
I also find myself so thankful that I have not yet reached the debilitating stage that many of you have - I can no longer live my life to the "fullest" but I can manage to get out of bed and get to work and do what I can around the house - I usually spend the evenings in bed and exhausted - not every day is a bad day and I have to keep being thankful for those days!!
I am overjoyed that I sent an email to Dr. Radan this morning and had a message on my voice mail from him in a matter of hours!!!
I just would like to find out if there is anything at all that I can do as a patient and consumer to increase the awareness of this disease that we are all suffering with - I dread the thought of being confined to my bed in a matter of months or years - and my heart goes out to those of you that are already to that stage. Any feedback and/or comments are welcome!!!
-- Melody