Risk factors for or clues to CCSVI???
Posted: Fri Jul 24, 2009 7:25 pm
I recently stumbled on this forum for CCSVI and would like your thoughts. Obviously you cannot diagnose me and are not doctors/nurses (at least I don't think most of you are!) but I am stunned by the notion that MS could be vascular in nature. My case history seems related in strong ways.
I was diagnosed 2 years ago with optic neuritis, headache, dizziness, and cognitive issues. I have T2 lesions and black holes.
I have been on Tysabri for 1 year.
Now to the vascular issues.
1) one doctor thought I initially had antiphospholipid antibody syndrome (AAPS), the autoimmune blood disorder that makes you get clots, since I tested positive on two different but related tests. Ultimately, since it wasn't a high positive, and given other tests, I got the MS diagnosis. Sometimes AAPS can mimic MS.
2) I have had (and still do) terrible varicose veins. I even had surgery to strip those veins out of my legs several years ago long before the MS diagnosis. This is chronic venous insufficiency in the legs.
3) I have a venous angioma in my brain which is a congenital and structural abnormality that makes some veins twisted like "a starburst." It is known as the most common blood vascular anomaly in the brain but is simply viewed as a "birthmark" of sorts with really no effect. See:
http://www.brain-aneurysm.com/dva.html
4. Strokes, clots, and clogged hearts run in my family on my Mom's side. My great uncle has 10 stents (no joke!) in his body due to atherosclerosis and is barely alive. My great aunt had a fatal stroke in her brain. My grandmother has giant cell arteritis, another vascular brain disease. And there are others.
Okay, now......doesn't it seem like I should get tested for CCVSI???? Am I right in thinking there may be a connection with me? I called Dr. Drake's office today and left a message.
Thanks!
I was diagnosed 2 years ago with optic neuritis, headache, dizziness, and cognitive issues. I have T2 lesions and black holes.
I have been on Tysabri for 1 year.
Now to the vascular issues.
1) one doctor thought I initially had antiphospholipid antibody syndrome (AAPS), the autoimmune blood disorder that makes you get clots, since I tested positive on two different but related tests. Ultimately, since it wasn't a high positive, and given other tests, I got the MS diagnosis. Sometimes AAPS can mimic MS.
2) I have had (and still do) terrible varicose veins. I even had surgery to strip those veins out of my legs several years ago long before the MS diagnosis. This is chronic venous insufficiency in the legs.
3) I have a venous angioma in my brain which is a congenital and structural abnormality that makes some veins twisted like "a starburst." It is known as the most common blood vascular anomaly in the brain but is simply viewed as a "birthmark" of sorts with really no effect. See:
http://www.brain-aneurysm.com/dva.html
4. Strokes, clots, and clogged hearts run in my family on my Mom's side. My great uncle has 10 stents (no joke!) in his body due to atherosclerosis and is barely alive. My great aunt had a fatal stroke in her brain. My grandmother has giant cell arteritis, another vascular brain disease. And there are others.
Okay, now......doesn't it seem like I should get tested for CCVSI???? Am I right in thinking there may be a connection with me? I called Dr. Drake's office today and left a message.
Thanks!