Keeping Site Up Or Not | Idiopathic Edema

ehbscorp · 2021-07-26T14:02:00.133Z

Just wondering if I should continue leaving this site up. I have had my Vyvanse taken away and am struggling with my Gastroparesis which is part of this syndrome for some of us. I would have to move out of New Jersey to get this medicine. I am currently taking Domperidone from Canada which helps with motility and Prevacid for nausea associated with this as well. The edema is on its own. I am on herbals but cannot tell how effective this really is. I am still waiting for word from Senator's office and have contacted them several times since our initial conversation and email correspondence. They are waiting for the Health Dept. who made the determination. We are trying to keep on top of this and push as best we can for us folks in New Jersey. I don't have any way of knowing how many people are affected by the "off label" problem but I know it is quite a few from my conversations with PA. Due to patient confidentiality and HIPPA, that is all the information I have. I am on the waiting list to talk with Dr. Check but I know his hands are tied. The new med he is using is great if you are also infertile (this ship has sailed for me at my age) but helps with high levels of prolactin, associated with this syndrome. So, should I keep this site up and going or do you feel it is of no benefit to you. I would love your feedback. I will pay the $100 if it is worth it to you. I don't think there are a lot of forums for this. I wish I had better news for all of us at this juncture but I do not. I had a test for the Gastroparesis which showed that after eating an egg sandwich with isotopes (yum), it should have been fully digested in 90 minutes but mine only digested 25% at 90 minutes. Uggh! I don't feel as well as I did on the Vyvanse and am forced to be as active as I can to help make things move. Not ideal all the time as you can imagine. How are you all coping with this disorder and what if anything are you taking at this point to help yourself. Let me hear from you to see if there is still interest in this site. Thank you.

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Increased Cellular Permeability Syndrome
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Contact: Dr. Check/Dr. Cohen PA 215-635-4400 or to my email: ehbscorp@hotmail.com

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