I have Cerebral Small Vessel Disease - so far caused loss of balance

HelloJust started searching, are there good support groups for CSVD and resources?Thank you in advance for any thoughts, comments and suggestions.

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.

Hi, I am 68, I too was diagnosed at the moderate level. I keep as busy as possible, however watch a lot of tv. Anything I do I am always fighting thru pain in my legs or worried about the dizzy thing, all very tiring. So I do a chore, sit down and repeat that all day. I drive as little as possible. I have two wonderful old dogs that are my life line they keep me going everyday. What do you find to do that is enjoyable?

Had Brain MRI today and diagnosed with Global Microvascular Ischemic Disease! See Neurologist in 2 weeks! Any treatment options? Had bad AFIB episode on Jan 28. 2025 and since have had issues with vision. balance, frequent headaches, fatigue, CT Scan during hospital stay did not show a new stroke, but had 2 in 2018 and 1 in Jan 2024 but recovered well from those. MRI in Jan 2024 following stroke did not show this new diagnosis! Had not had an AFIB episode for 15 months prior to the Jan 28th one, but these other lingering problems had me worried. Any suggestions on slowing/stopping this new progressive problem! 76-year-old female! Thanks!

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.

I just found out by coincidence that I have CVSD. I had a bad reaction to a vaccine that made my immune system go crazy, and all labs came back normal, so I suggested to my primary care provider should I get a brain MRI. Lo and behold, I found this out. I call this a blessing in disguise. I have a lot of fatigue, and the brain fog is unreal. I am waiting to see my cardiologist and neurologist. Does anyone else experience this? How do you deal with it?

@keithl56 what is CAD?

@karen252 I so understand what you’re xperiencing.
My doctor did an MRI because she suspected Mild Cognitive Impairment and it showed severe CSVD. This dx has so changed my life for the worse. I can’t stop dwelling on it. I am having a hard time finding a vascular neurologist and that doesn’t help.

So I’ve done a lot of research and have changed my diet and am exercising, however since my CSVD is severe I wonder if it is pointless.

Sorry to dump on you but I have no one to talk it over with.

My balance is off and feel weak. Also lightheadedness, these are the main issues. What symptoms do you have?