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waher · 07-28-2006, 09:03 AM

hi,
at 40 i was misdiagnosed with multiple sclerosis, i have just been rediagnosed after 8 months of testing with multiple strokes. more then 15. i'm disabled with with more then 12 distinctive symptoms. from dementia to weakness in legs and left arm. i use a cane & scooter. spascity is a major problem, also.
anyway i'm looking for information on how do i treat my symptoms specific to the strokes. i'm on lipitpr, cozzar, asprin, folic acid, perocet for spascity at night, and just reciently aggrenox. i've had 2 MI's requiring 2 stents at 48. i also have a slow growing arotic anurism still under 4cm.
the concensis of doctor's opinions is that the strokes is an unnamed family genetic disease. like multiple sclerosis, i just have to live with it. unlike MS i can find little info on the treatment of my symptoms, also including fatigue, swallowing problems, dizzyness, pain , bowel & bladder problems, etc.
the only real symptom treatment that has worked for me is the perocet and MJ.
any websites or books for early onset genetic stroking (or now known as "billy bones diseace" a family joke) would be appreciated.
also my vascular surgen believes that my non-stroke vascular problems are seperate from strokes. i have strokes the rest is best guess.

farmwife · 07-30-2006, 06:43 PM

Hello...you might want to look up CADASIL (Cerebral Autosomal Dominate Arteriopathy with Subcoritical Infarts and Luekoencephalotphy) See if any of your symptoms fit. Symptoms are often misdiagnosed as MS. My husband was diagnosed 2 years ago after suffering a debilitating stroke but having no known risk factors. He has had many tias and another stroke March 12. If you look around you will also find a CADASIL support group if you would like more information or should need one in the future.

waher · 07-31-2006, 10:57 AM

the head of columbia nurological institute at ny-prestberian says it's not cadisil but a personal family genetic disease. and my admonimal arotic anurism has grown from 3cm to 3.8 in two years, so my vascular surgen now says it's probially part of my genetic stroke problem, and that it must be a vascular problem.
but i will go back to cadisil groups to see if any of their meds might be worth trying. thanks

janet119 · 08-05-2006, 10:22 PM

i have had 7 strokes by the age of 38. i had two blood diseases going on i didnt knwo about. my homocysteine was sky high at 36 (shoudl be below 8) and i have antiphopholipid anitbodies syndrom.
i have some birth defects in the arteries in my head and coupled with the premature atherosclersis the blood problems caused my head was a mess.
anyhow...i am 44 now. i take coumadin (blood thinner), plavix (antiplatlet), paxil (antidepressant used to fix lability or something like that, result from strokes), zocor (cholestrial med taken for the side affect to the arteries), altace (bp med also taken for the side affect for the arteries), baclofen (anti spastic med for the spasticity and clonus i have), b6/folic acid and b12 shots (vitamins to keep my homocysteine under control).
the percocet you take for the spasticity isnt a med for that it is a pain killer. for stroke the best meds for spasticity/clonus is valium, baclofen and dantrium. valium is probably the best i found. i do find i have to change about every year or so when the body gets too used to it.
i have learned in the last 6 years to avoid what i know will put my leg and arm in clonus etc. doesnt always work but i got pretty good at it. my balance is probably my worse problem. i had 2 cerebellum and five brain stem strokes so that explains the balance thing. i used a cane and a scooter too. if i am tired i will occasionaly take out my walker. i have to sleep alot too.
i am curious...where do you have your stents? i have one in my basilar artery.
janet

janet119 · 08-05-2006, 10:24 PM

i also used to take aggrenox which is a vaso dilator and aspirin. if you open one of the capsules each capsule has a 25mg aspiring in it..LOL

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