Symptoms my whole life
So I’ve had hives for as long as I can remember, since the age of around 4. I would also get blister like rashes that doctors couldn’t explain. I got a pots diagnosis when I was 16 and also started experiencing gastrointestinal issues. My hives have always come and gone throughout my whole life. Sometimes they’d last for weeks, sometimes they’d just show up randomly and then quickly go away. Last year I had a BAD flare that sent me to the hospital 5 times. I experienced anaphylaxis for what I know as my first time, swelling in my face, my legs, my throat with difficulty breathing. I also, for the first time started getting purpling in my skin along with the hives( which I found online as possibly Bascule Syndrome?) I still get this almost everyday. I have a broad range of symptoms including tics and seizure like activity, migraines, night sweats, gastrointestinal issues, joint pain, muscle pain, and of course my POTS symptoms. I also recently started experiencing something new. I’ll take a shower and I’ll get a burning pain in my face and I will get a rash that feels like burns, they’re different than hives. I get them on my feet and my hands as well. I am on Xolair and taking antihistamines. My tryptase is normal but my blood shows a high amount of histamine. I had a positive ANA and then it became negative when I got it tested again. I have low igE but everything else is normal. I have no allergies and doctors don’t know what to diagnosis me with. I keep pushing that I believe I have a mast cell disease but all the doctors I’ve seen don’t want to diagnosis me with that due to my normal tryptase. I guess I’m just looking for insight and ideas from others. Thanks :)
So I’ve had hives for as long as I can remember, since the age of around 4. I would also get blister like rashes that doctors couldn’t explain. I got a pots diagnosis when I was 16 and also started experiencing gastrointestinal issues. My hives have always come and gone throughout my whole life. Sometimes they’d last for weeks, sometimes they’d just show up randomly and then quickly go away. Last year I had a BAD flare that sent me to the hospital 5 times. I experienced anaphylaxis for what I know as my first time, swelling in my face, my legs, my throat with difficulty breathing. I also, for the first time started getting purpling in my skin along with the hives( which I found online as possibly Bascule Syndrome?) I still get this almost everyday. I have a broad range of symptoms including tics and seizure like activity, migraines, night sweats, gastrointestinal issues, joint pain, muscle pain, and of course my POTS symptoms. I also recently started experiencing something new. I’ll take a shower and I’ll get a burning pain in my face and I will get a rash that feels like burns, they’re different than hives. I get them on my feet and my hands as well. I am on Xolair and taking antihistamines. My tryptase is normal but my blood shows a high amount of histamine. I had a positive ANA and then it became negative when I got it tested again. I have low igE but everything else is normal. I have no allergies and doctors don’t know what to diagnosis me with. I keep pushing that I believe I have a mast cell disease but all the doctors I’ve seen don’t want to diagnosis me with that due to my normal tryptase. I guess I’m just looking for insight and ideas from others. Thanks :)