Good morning, on this beautiful spring day! I Thought I would tell my full story to to explain in detail other than my little introduction and you guys can get more of an insite. I am a mother of 3 my first child past on 6 hrs. after birth at my age of 19. With all 3 births i recieved oxygen now knowing why… I am gonna say I have always been a tough girl the only girl growing and i mean including cousins i was the only girl period. Any how I never complained growing up about anything getting hurt, sick, etc. I always had hard working jobs: warehouse I never used to depend on anyone I was one of those i got it person my house always spotless. I noticed back in 2011 I was feeling tired and in my 20’s I felt like something was wrong went to Dr. He ran a ekg and said I had a slight murmur and it shouldn’t effect me. So not being a complainer am like okay, and moved on with my life. Then 2015 I had really bad migraines I went back to the Dr. at this time. My blood work came back low white cells in which he prescribed me iron, for the following nine months after blood work every month, no results. Once again stopped going to the Dr. So around this same time in 2016 I was working and i started having pains in my hands I started being unable to to grasp products at work, I also had stairs at work and home in which going up them I was sweating purfusely and extremely out of breath. When I would wake up my right ankle would feel so tight like it was going to snap! I figured yrs. of warehouse was taking a toll on me. Mean while I had no choice but to quit work someone like me who never complained had to say “I Can’t Do It!” very big words for me!!! My journery now began to find out whats the problem. Now at the Dr. once again my complaints were: wide pain, dropping things, headache, tired, sweats no strength! While examing me she noticed my heart rate was low, and now my white cells and lymphs are elevated and since haven’t gone down, after she checked me for arthritis hiv aids lupus everything in her power to test everything negative. She then sent me to cardiology in which said i was fine Hematology at the same time they did blood work for cancer no cancer, she said that there was no need for further testing. Meanwhile cardiology refers me to pulmonary mind you I have told every Dr. my mother has PAVM still disregards it sends me to sleep study results for that were all good except low oxygen and while laying on my back had some irregular activity. He then prescribes me a cpap machine, that doesn’t help at all. Pulmonary then refers me to Rhumatology which then diagnosed me with fibromyalgia; and he prescribes me lyrica, cymbalta, and ambien. Almost a year passes and my mother comes for a visit from Tx. she goes to an appt. I had with Pulmonary she demands a CT on the chest and the results were I have 2 PAVM 1.6 in the posterior left lobe which I had an embolization on in Oct. and one that was 1.0 in the right middle lobe that one I will have embolization next month. After the embolization I had some chest pain or I say it felt like my ribs hurt, my left side is starting to hurt my legs hurt I sprain my ankle a month ago i just stood up and foot gave in. I feel so very delicate, headaches, dizzy, blurried vision and after on of the memembers Dick had mentioned HHT I looked it up and I also thought I been breaking out with acne but the photos look alot like what I have on face and neck. Iam so glad I found you guys. Hope everyone having a good day considering…
Hey Stephanie,
It’s great to have your fuller story. If you’ve got little red spots on your mucous membranes … lips would be a likely place, they are called telangiectasias and they would be a strong sign of HHT. It would also be a bit more likely that you might have AVMs elsewhere, so that might relate to your newer symptoms.
Definitely worth going back to the doctor to ask about HHT and any possibility of multiple AVMs.
I hope it works out better than that, though!
Very best wishes,
Richard
Thanks so much for posting that! Holy smokes you have had a heck of a journey through the medical maze. I sure hope the effects of your first embolization moderate and all goes smoothly for the next one. Take Care, John
All though my story is nowhere as terrible as yours, I went all over the world too to find out what was wrong with me too. I went from a sleep study, then hematologist, then cardiologist. I had had headaches, falling asleep driving ect. I made my mind to go to the doctor when I zoned out when my kids were in the car with me. That’s when I knew I had to do something. The hematologist discovered that my ferritin was very low. It was a 4. So I got an iron infusion and thought all was well. But October the 9th, 2012 I had a seizure at work. Finally got an MRI. Found AVM. If someone would have done an MRI to begin with, I wouldn’t have had to go to one doctor after the other.
Thank you, everyone! I love this so much, hearing everyone story knowing your so close but yet so far… I am gonna call UCLA and see about HHT. I am also going to share this info with my Dr. this info may be it will be helpful for him as a pulmonoligist. My journey seems long, but I am scared to have a stroke like some of you or AVM in other places, I also did not mention since finding out about me having AVM; my mother and I believe that my grandmother (her mother) too had it for she had strokes at a young age she also died after having an anyerizim followed by many strokes which ended her life. My grandmother also died at a very young age also from an anyerizm, leaving my grandmother to mother her siblings at a young age. I am sure I’ll be fine I know I have learned to live life differantly, I don’t allow people to still my joy, when it rains it’s just as if the sun is shining to me, I love to hear birds look at the trees move; lol I can go on! I hope everyone has a wonderful headache free or at lest toleratable day!!! can’t to hear from you guys again…
I’m with you completely. When I had to stop driving, as my AVM was making me dizzy, it was the winter through to spring. Although it could be said it was the worst time to not be able to drive, I celebrated the fact that I saw the spring unfolding in a detail I always miss when I dash to or from work in a car. And actually, I liked the sharp cold of winter compared with the rain showers of spring!
It is these normal things that are so beautiful that are worth celebrating when you can see them and others don’t.
Let us know how you get on. Very best wishes,
Richard
I know it’s 2 years later, but I know that if you went to UCLA, you received some of the best care possible by Dr Justin McWilliams and the others at their HHT Center of Excellence.
I was diagnosed with 3 large pulmonary AVMs and 3 cerebral AVMs in 2013 when I was 57 yrs old. My PAVMs were all treated and so far (9 years later) none of the others are large enough to need treatment. I had one cerebral AVM removed by craniotomy and have chosen to leave the other two alone as they are in areas that could cause severe deficits. I’ve done very well since then, although I’m on nocturnal oxygen (at night only), but am working full-time and looking forward to retirement in 2 years. I do have frequent nosebleeds, but they have never lasted long or required a blood transfusion, so I’m fortunate there.
My older brother died of a massive cranial hemorrhage from an AVM, but was never diagnosed with HHT which caused me to do some research. My father, brother and myself all had frequent nosebleeds all our lives. I basically diagnosed myself with HHT which was confirmed at UCLA. They may have listened a bit more because I’m a medical professional.
I hope you are doing well.