This is a fantastic presentation. Thank you Michael and CADASIL Consortium - much appreciated. That you went "overtime" Michael, is testament to your passion and dedication. Here's to the continued awareness raising and information sharing of CADASIL. Regards, thecadasilblogbloke
Diagnosed at 47 (Athena/Quest), now 65. Third generation (first "arteriosclerosis" grandfather who died at 58 when I was 4 (1963), second "leukodystrophy" mother who died at 67 of small cell lung cancer with CADASIL (2004). Have two siblings with DNA evidence. In the fourth generation now, so no doubt in the fifth also). Cortical Spreading Depolarization (CSD) caused by hypoxic events like a blood vessel collapse or rupture, meaning term "TIA" (causes no harm) is wrongly used in CADASIL? False claim in CADASIL or they aren't TIA (a descriptive term only)? I have had hundreds of those events, and stopped counting at 50 (2014). Microangiopathic events leaving evidence of iron deposits cause white matter lesions? "Disappearing White Matter Disease" confuses patients with CADASIL who wrongly believe we can heal our WMD. Published info suggests the magnesium (bisglycinate) helps prevent CSD. Personal experience - it cuts the number of cerebral events significantly and helps also with peripheral artery disease. Poorly named CADASIL, because it is actually systemic, and biopsies show organ involvement of GOM deposits. Change syndrome name? Keeps medical folk ignorant of the broad reaching illnesses we experience as they focus in stroke/cognition mostly. Examples: peripheral artery disease, Raynaud's Syndrome/ Cold Urticaria, nephroangiosclerosis, etc. Earlier diagnosis by imaging would help diagnose; however, equipment is not available for the micro angiopathy which pre-exists CADASIL Dx? The make-up of white matter lesions (such as radiologist inability to image CTE or Lewy Body Dementia prior to autopsy)? We can have literally hundreds of CSD's (I have, at age 65). Suspect that CSD causes the makeup of brain lesions (many silent strokes, also), just still too small to be imaged? CT scans are useless unless there is an ICH. "Psychiatric Symptoms" are actually non-imaged CSD's results? Not bi-polar (emotional lability), not borderline personality disorder (brain damage, often tied to strokes and is the damaged brain's attempt at neuro plasticity)? The drugs don't work well for us, and some doctors won't treat BPD in any way, as it is thought resistant to healing - because it is not psychiatric, it is actual brain damage (needs a different approach) - brain retraining. Putting CADASILs on meds for psychiatric reasons may be why, even in the general population without CADASIL, most psych meds are useless to us and many can exacerbate our symptoms (bringing on apathy, weight gain/increased blood pressure which can blow our our GOM-infested blood vessels; also, some drugs wrongly used in us by doctors who don't know the difference between arteriopathy and thrombosis (like statins, anti platelets, aspirin, tPA) can worsen us with more micro bleeds (I have seen estimates that we have bleeds up to the 60% level meaning daily aspirin at any level creates worse bleeding with each arteriopathic event). NOTE: much published conflicting CADASIL info is out there. Why not explore L-Arginine/ L-Citrulline to combat the blood vessel destruction caused by GOM? Keeping blood vessels open longer with the use of Nitric Oxide would be less harmful than aspirin, although GOM wins in the end.
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This is a fantastic presentation. Thank you Michael and CADASIL Consortium - much appreciated. That you went "overtime" Michael, is testament to your passion and dedication.
Here's to the continued awareness raising and information sharing of CADASIL.
Regards,
thecadasilblogbloke
Diagnosed at 47 (Athena/Quest), now 65. Third generation (first "arteriosclerosis" grandfather who died at 58 when I was 4 (1963), second "leukodystrophy" mother who died at 67 of small cell lung cancer with CADASIL (2004). Have two siblings with DNA evidence. In the fourth generation now, so no doubt in the fifth also).
Cortical Spreading Depolarization (CSD) caused by hypoxic events like a blood vessel collapse or rupture, meaning term "TIA" (causes no harm) is wrongly used in CADASIL? False claim in CADASIL or they aren't TIA (a descriptive term only)? I have had hundreds of those events, and stopped counting at 50 (2014). Microangiopathic events leaving evidence of iron deposits cause white matter lesions? "Disappearing White Matter Disease" confuses patients with CADASIL who wrongly believe we can heal our WMD. Published info suggests the magnesium (bisglycinate) helps prevent CSD. Personal experience - it cuts the number of cerebral events significantly and helps also with peripheral artery disease.
Poorly named CADASIL, because it is actually systemic, and biopsies show organ involvement of GOM deposits. Change syndrome name? Keeps medical folk ignorant of the broad reaching illnesses we experience as they focus in stroke/cognition mostly. Examples: peripheral artery disease, Raynaud's Syndrome/ Cold Urticaria, nephroangiosclerosis, etc.
Earlier diagnosis by imaging would help diagnose; however, equipment is not available for the micro angiopathy which pre-exists CADASIL Dx? The make-up of white matter lesions (such as radiologist inability to image CTE or Lewy Body Dementia prior to autopsy)? We can have literally hundreds of CSD's (I have, at age 65). Suspect that CSD causes the makeup of brain lesions (many silent strokes, also), just still too small to be imaged? CT scans are useless unless there is an ICH.
"Psychiatric Symptoms" are actually non-imaged CSD's results? Not bi-polar (emotional lability), not borderline personality disorder (brain damage, often tied to strokes and is the damaged brain's attempt at neuro plasticity)? The drugs don't work well for us, and some doctors won't treat BPD in any way, as it is thought resistant to healing - because it is not psychiatric, it is actual brain damage (needs a different approach) - brain retraining. Putting CADASILs on meds for psychiatric reasons may be why, even in the general population without CADASIL, most psych meds are useless to us and many can exacerbate our symptoms (bringing on apathy, weight gain/increased blood pressure which can blow our our GOM-infested blood vessels; also, some drugs wrongly used in us by doctors who don't know the difference between arteriopathy and thrombosis (like statins, anti platelets, aspirin, tPA) can worsen us with more micro bleeds (I have seen estimates that we have bleeds up to the 60% level meaning daily aspirin at any level creates worse bleeding with each arteriopathic event). NOTE: much published conflicting CADASIL info is out there. Why not explore L-Arginine/ L-Citrulline to combat the blood vessel destruction caused by GOM? Keeping blood vessels open longer with the use of Nitric Oxide would be less harmful than aspirin, although GOM wins in the end.