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I have Cerebral Small Vessel Disease - so far caused loss of balance
I have vascular small vessel disease that so far just has caused a severe loss of balance. I walk with a cane, but it is getting harder. Likewise exercise is not easy. I still drive short distances. I feel perfectly normal lying down and it is so much easier to do that. The sad part is I don't really see anything that is going to end this as otherwise I am healthy. I know there are many worse things. Does anyone else have this and how are you coping?
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What are some of the changes I can make? I'm afraid I'm probably not in the early stages but it's taken quite a while for anyone to send me for a MRI.
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1 ReactionThanks, Colleen. I am trying to read everything I can find on the subject.
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1 ReactionMy next appointment is July 6th. I think that the next steps will be to take more tests to see what's going on. They will talk to me about options and maybe have some ideas for headache pain other than aspirin. Hopefully they will have some ideas about meds for seizures.?
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1 ReactionI agree basically doctors cant tell you want to expect because they dont know themselves
It is a progressive dieases and there is no treatment for it but if it is in the early stages there are changes you can make to slow it down i have been livi g with the effects of it for a few years now my husband has it
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1 ReactionMy husband has it
Welcome @jeans. I found some detailed information about Cavernous Malformation on the National Organization of Rare Diseases website http://rarediseases.org/rare-diseases/cavernous-malformation/
I used the search function, but didn't find anyone who had specifically mentioned cavernous malformation on Connect - yet. Thanks for starting the discussion. When is your appointment at Mayo?
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1 ReactionI've been diagnosed with Cavernous Malformation of the right temporal lobe. I had a MRI because I had severe headaches, some falling with black outs with weakness afterwards. I go into Mayo soon to find out more about it but wondered if anyone has heard of this? It seems to be kind of rare and sometimes inherited.
@beck - How was your appointment with the neurologist last week?
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1 ReactionHere is information about Dr. Zeineh's research that @caregiver49 refers to
"Study finds brain abnormalities in chronic fatigue patients" https://med.stanford.edu/news/all-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html
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