This site is for information not for diagnosing or prescribing medications.

I have this disorder and was diagnosed in 2006. I pay for this site to make people aware of this disorder and to help those with this syndrome to seek the medical treatment they need. I am a retired registered nurse and do this site to educate and share information. I do not diagnose or treat this syndrome.

While I understand that people are in different countries and are unable to get the medication that best treats this syndrome, I cannot diagnose, treat or prescribe any medications or take the place of your physician. I am happy to help others but please realize that I am doing this to educate and hopefully have more physicians take up the gaunlet to help us with this syndrome. I enjoy research and can share what I find but I will never diagnose or treat anyone. I am happy to also bring people together to share information and help one another in knowing we are not alone and what has worked for us.

7 comments

7 Comments

Stifler1002

Jul 13, 2023

I understand you. Thanks anyway for the info. I'll try other drugs until Adderall is gone.

I have a question for you. My swelling doesn't go down when I lie down. But the body looks pale. bruising easily.

ehbscorp

Jul 28, 2023

Replying to

Increased cellular permeability can cause an elevated level of platelets in your blood, which is called thrombocytosis. Platelets are blood cells that form clots to stop bleeding. Elevated platelets can cause easy bruising and heavy bleeding after a small injury. I had so much bruising as a child, I was taken into NYC for testing as they thought I had Leukemia. I didn't bleed abnormally however. They never found anything wrong. Interesting. Yes, it can cause an increase of RBC as well. I don't remember reading about this in any of the literature and whenever I get to speak with Dr. Check, this would be an interesting question.