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| It's not a stick, it's my arm |
Dr. G. called back late this afternoon (Thurs.) All she knew was this is not classic connective tissue disorder. It would be something else. She said I could talk to someone in vascular medicine. But I should not worry about it. Easier said than done.
11.29.2020. Almost 10 years to the week. I got a diagnosis. Of what was going on here in this picture. This moment, never left me. I never could forget this . It was so startling to see this happen in my arm. When earlier it also happened in my forhead. I remember telling my doctor,” what if this bursts in my forehead? “ he said, “well. It would just be a bruise.” I said “but just on the other side of the bone it would be a stroke”
I finally had had it, after a series of frustrating events this spring and summer. I finally insisted , I have to have a genetics test. I wanted Mayo. But the short of the long , with one little blood draw... I have Loeys Dietz type four. You can not believe the relief . I’m not crazy ! My family... finally had an answer ! Why we have had so many severe near fatal bleeding issues. My aortic dissection! My grandmothers Neely bleeding to death , my aunts not clotting after open heart. Anyway the relief turned to reality One week later and I had my first full body arterial scan. They found a small inner carotid artery aneurysm. It’s small. I’m waiting for another doctor appt now. But I have my answer. This really was and is and always has been happening. My atrial septal defect ... the constant finger, toes and other vessel ruptures. Even the weakness making strabismus in my long list of problems. Loeys Dietz type four. Explains it all. My blood work answered the mystery.
3/12/21... this we learned after three mris and Mras. Is manifestation of fibrous muscular dysplasia . They found it on the inside of me too. Over a decade to figure it out. But this moment in time..l never forgot. I knew you couldn’t make this stuff up. Now I have my answers
3 comments:
What did it turn out to be. I have this on my arm and so did my mom.
They never figured it out. It went away. I has come back once then went away again. I did show Mayo Cardiology. I was scheduled to see Marfans cadiologist but never made it to him as I had an emergency before making it to him. So still don't know. They are perplexed too. But sites move. I also had them in two places on forehead. If you find out what yours is please post! For my sake.
August 19,2011 - strange arm symtoms again today after taking imitrex for terrible migraine. Migraine was so terrible I froze in my car for a minute couldn't move. Like back in Nov. of 2010 when I thought I was going to stroke. Very upsetting. TIA possiblity crossed my mind. Arm veins visually were MOVING wiggling today, watched while I was working today. Just strange! Then it works all the way up to inside of my arm like arm is being pinche. - Just logging here.
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