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 take Zetia and Rosuvastatin to try to manage the progression of my CAD, and since I am asymptomatic I don't need anything else. Unfortunately, the first symptom can be a fatal heart attack!

I was diagnosed with CSVD because I was having syncope type episodes and they did the neuro workup as well as the cardio workup. My MRI's show multiple hyperintensities where the ischemia is killing off brain cells as well as evidence of multiple lacunar strokes. I also have an abnormal EEG which is to be expected. My next neuro appointment is 3/12, so maybe I'll get some sort of update that I can share with you.

So far I don't think that this disease has yet manifested much in the way of cognitive problems except for a few isolated symptoms. My main problems are balance/fall related, occasional aphasia or slurred speech, and asymmetric hearing loss with tinnitus. I think everyone can have quite varied symptoms depending on what areas of the brain are being affected. If you have an MRI that states what areas are being impacted you can probably look up what functions are associated with that area and see if your symptoms correspond.

The most important thing is to live your life and not dwell on the negative (easier said than done). When my cardiologist called me with what sounded like a death sentence it shook me up. I started taking some antidepressants and anti-anxiety drugs to help me cope and have since been able to wean myself off of some as I came to terms with everything. I also did some cognitive behavior therapy which was beneficial. Do whatever you need to do to take care of yourself. Hopefully you have some supportive friends/family since that can help as well.

Best of luck!

Your MS diagnosis is interesting. My sister also was diagnosed with MS, and just recently they told her that many of her symptoms are likely caused by CSVD rather than the MS.

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?