As an HHT patient I was interested to know, what kind of symptoms you had before avm was found and where was it. Im asking because they are looking my avm right now…again. I had since 8 year old migraine headaches and nosebleeds. When 10 years old, started to get sick, flues, sinus infections, respiratory infections, angina, ear infections… at the hospital they thought my lung avm was a pneumonia. When 14-15 years old i got very sick, had cyanosis, my hair got thin, couldnt sleep. I got srtrange swelling to my ankles and face. Got pimples all over face and back. Doctors told my parents I was dilusional. Then went to lobectomy where my lowest right lung lobe was removed. Since then i needed to get embolizations to lung avms, which got bigger every time after pregnancies. Otherwise i was fine. Until now. I have pulsatile tinnitus, my whole body is swollen pretty badly, my lower back is numb to the point i couldn feel my b12 dose which is given with a relatively long needle. Its very hard to walk, i walk a short distance and then my back and abdomen swell. Im conatantly sleepy, have memory issues. It seems my bladder isnt getting full at all and stuff that comes out of me is very thin. So something is wrong, nothing seen in blood work or hormonal so it has to be yet another avm. Have had many many telangiectasias now emerging to my body. Also my hair is getting thinner and again having pimples like a teenager. Really hope to find out has anyone had same kind of symptoms.
Hanna,
Wow! You do have a lot going on.
I did a bit of information gathering about a month or two ago and gathered information of different kinds into different categories. Among those, I put a lot of stories, questions and information about pulmonary, heart, lungs and HHT into their own category.
Richard
Thanks for info, im new so dont handle this yet. I dont know which avm i have. My older relatives have had the same, first pulmonary and then brain, stomach and so on. My father lost his eye. We dont have HHT center here so im trying to find out which avm it is. I know its a bit funny, but Im really helpless, have to get a wheelchair because i cant walk anymore. I try to seek stories from different places then 
Hi Hanna. My AVM is left temporal and was discovered as a result of a bleed. Extreme head ache, memory loss including names of people I’ve known for years, meningitis type symptoms and a few other things. One really telling sign was my pupils with one dilating and one not.