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49, and newly diagnosed with CSVD

Stroke & Cerebrovascular Diseases | Last Active: Feb 4 4:09pm | Replies (3)
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@keithl56

Sorry to hear of your diagnosis. I'm not aware of any support groups, but think that it would be a good idea.

I also have CSVD. It is scary knowing that you have a progressive disease without treatment options. It is insidious, but you may be fortunate and it might not manifest with serious implications for quite a while.

What happened that prompted testing that led to the diagnosis? Are you already symptomatic or was this found through routine testing? Have you been tested for CAD as well, since these go hand in hand with both being caused by the same mechanism (plaque build up)?

Hang in there and enjoy life to its fullest before CSVD has a chance to impact your life.

If you want any information that I have researched or just want to vent please let me know.

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Replies to "Sorry to hear of your diagnosis. I'm not aware of any support groups, but think that..."
arenee | @arenee | Feb 4 10:21am

Hi Keith,
Have not been tested for CAD.
In retrospect, it's easy to see a slight change over the last three years with employment history and other things. One year ago, I had a barrage of symptoms that ended up leading to an MS diagnosis, but my memory caused my neurologist to persist with more tests. An aEEG confirmed his suspicions of CSVD. He has just prescribed Oxcarbazepine which I hate with a passion, too many side effects, I see him again in April when I believe he will give me the dreaded 'D' diagnosis. I would love to know if this is hereditary as dementia as well as Alzheimer's runs in my mom's side of the family heavily.
As for your situation, do you take specific medications for either CAD or CSVD? Or just meds to control symptoms?
I appreciate the contact, any information is GREATLY appreciated.
Hang in there.

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