Cadasil?? - Stroke Message Board

Xanadu3 · 07-15-2004, 08:29 AM

Does anyone have any personal experience with this? We are testing for it. I have researched it, but would appreciate some personal insight. Kind of scared...Thanks.
Take care-

farmwife · 07-15-2004, 10:32 AM

Xanadu,
I am very familiar with Cadasil as my husband was diagnosed with it in March. Who is being tested for it? Yourself, husband, child. When are the tests being done? My husband had the genetic test and took about 4 weeks for the result. I have been searching ever since to find more afflicted with this disease. What were the symptoms that make the dr. suspicious. Lots of questions being fired at you, I know, but I will be glad to answer any questions you have. I also know others with this disease and my daughter is becoming quite an advocate for Cadasil Awarness. Hope to hear from you again soon.

Xanadu3 · 07-15-2004, 12:40 PM

farmwife,
I just posted to your thread on the brain disorder board. So you can just catch me here. All my details (so I don't bore you) are on the Immune Disorder board under "Frustrated and need help" on 6/30.

Forgive me, I have a raging headache today. So far, it looks like we are the only ones on the boards on this. Maybe more will pop up.

Short version...Age 36. History of migraines w/auras, TIAs/strokes started last month. My speech is still a little slurred. I can cover it pretty well. No one else notices, but it bothers me.

Neuro wants to do the skin biopsy. Not scheduled yet. They will call. Also wants to do another MRI.

I can only imagine what you guys are going through. You said you liked his neuro. So you're happy w/your docs. That's comforting on one level. You said he did the genetic test and it took four weeks. Do you have kids? What have they told you about testing them, or ever? What about testing of his parents?

More later. Take care. Prayers.

farmwife · 07-15-2004, 03:43 PM

Xanadu,
I'm so sorry to hear of your headache. Migranes are a very common sign of Cadasil but they are also indicative of other problems also. We have 6 grown children with #6 and 7 grandchildren on theway but so far none of the kids have been tested and probably won't untill they start showing signs of the disease. My husbands parents have both passed away, although he does have 7 surviving siblings with only one showing any signs(migranes, breathing problems and muscle spasms) None have had any strokes or Tia's yet and most of them are older than my husband(he is 56) You can however carry the gene but with no mutation will not get Cadasil, but their children could. I have been studying this disease for 4 months now and the only thing for sure is how different it affects everyone. We do have one son that I'm concerned about. He is 28 and has had headaches for quite awhile now. We go to genetic counceling soon, and have a neuropsycology test scheduled for next week. I will pray that you are negative for Cadasil but I also realize you just want answers to your pain and I don't blame you. We do like our neuro dr. and he is trying his best to help with the pain. When you had your MRI done did the dr. mention any lesions in the white matter? When are you going to be tested? Write back when your pain goes away which I hope is very soon.
Take Care

Xanadu3 · 07-16-2004, 09:32 AM

farmwife,
I am having the MRI this afternoon to look specifically for the white matter abnormalities. They said they will call me to schedule the skin biopsy. I go on Monday for some nerve testing and cardiologist.

It sounds like you are very blessed with a large family! What tests did they give your husband to diagnose this? I know you said one was a genetic. How was that done? Is it a blood test, skin? I've been reading everything I can find, just in case. Knowledge helps. I'll keep you posted.

Trying not to worry until there's something to worry about...