Xanadu3
07-15-2004, 11:29 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-
Take care-
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farmwife
07-15-2004, 01:32 PM
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.
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, 03:40 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.
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, 06:43 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
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, 12:32 PM
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...
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...
farmwife
07-16-2004, 02:10 PM
Hi Xanadu,
Did you headache finally go away? I sure hope so. I have had hormonal migranes and they are terrible but lukily mine are gone.
My husband had the blood test in which the test for Cadasil in the 19th chromosome. He hasn't had the skin biopsy, the dr. didn't feel it necessary because of his history with the stroke, some tia's and the lesions in the white matter. He had all the symptoms so when the blood test came back positive he was already sure it would. His first MRI was 2 years ago when he had his stroke and he has had 2 more since the last one was in Jan. 04 and he had more lesions than 2 years ago, so it is progressing.The neuo psyc test will give them a baseline on the dementia, and he also has left side paralysis. Right now we are trying to find some releif for his leg pain. I was like you when we found out about Cadasil and I still do alot of research. My daughter as I said earlier is very active in Cadasil Awarness and raising funds for research. Since the kids have a 50/50 chance of carrying this gene and most all of them have kids we are all very concerned. Will you know the results of the MRI today? Please let me know as soon as you find out. I may not be on for a few days. I have a housefull of company coming for the weekend, we are having a family reunion, but I will check for your post as soon as I can.
Take care, my thoughts are with you!
Did you headache finally go away? I sure hope so. I have had hormonal migranes and they are terrible but lukily mine are gone.
My husband had the blood test in which the test for Cadasil in the 19th chromosome. He hasn't had the skin biopsy, the dr. didn't feel it necessary because of his history with the stroke, some tia's and the lesions in the white matter. He had all the symptoms so when the blood test came back positive he was already sure it would. His first MRI was 2 years ago when he had his stroke and he has had 2 more since the last one was in Jan. 04 and he had more lesions than 2 years ago, so it is progressing.The neuo psyc test will give them a baseline on the dementia, and he also has left side paralysis. Right now we are trying to find some releif for his leg pain. I was like you when we found out about Cadasil and I still do alot of research. My daughter as I said earlier is very active in Cadasil Awarness and raising funds for research. Since the kids have a 50/50 chance of carrying this gene and most all of them have kids we are all very concerned. Will you know the results of the MRI today? Please let me know as soon as you find out. I may not be on for a few days. I have a housefull of company coming for the weekend, we are having a family reunion, but I will check for your post as soon as I can.
Take care, my thoughts are with you!
Xanadu3
07-16-2004, 03:03 PM
farmwife,
I don't go until after work today. I'm sure they won't give me the results until at least Monday or Tuesday. (It will be a long weekend.)
Now, I had a MRI after the stroke in June. I know we are doing today's to check for more recent "events," (besides the white matter abnormaties), but don't you think they could have looked at the earlier one for WMA? The not knowing is awful. Or maybe they did, and they want to see how it's changed? Heck, I don't know. All I know is they want to do another one and a skin biopsy. I don't know if that should make me worry or not.
AGAIN: Try not to worry until there is something to worry about...
I can handle it much better if they just shoot straight w/me. Don't be vague, etc. Facts I can deal with.
I will post here as soon as I know next week. Take care and have fun at the family reunion!!! Many prayers. :angel:
I don't go until after work today. I'm sure they won't give me the results until at least Monday or Tuesday. (It will be a long weekend.)
Now, I had a MRI after the stroke in June. I know we are doing today's to check for more recent "events," (besides the white matter abnormaties), but don't you think they could have looked at the earlier one for WMA? The not knowing is awful. Or maybe they did, and they want to see how it's changed? Heck, I don't know. All I know is they want to do another one and a skin biopsy. I don't know if that should make me worry or not.
AGAIN: Try not to worry until there is something to worry about...
I can handle it much better if they just shoot straight w/me. Don't be vague, etc. Facts I can deal with.
I will post here as soon as I know next week. Take care and have fun at the family reunion!!! Many prayers. :angel:
Xanadu3
07-16-2004, 03:20 PM
farmwife,
Hello again! They just called and scheduled the skin biopsy for Monday also. (3 appts now for Monday) :p They said they wanted to do it today, but didn't get me called in time. Talk to you next week. :wave:
Hello again! They just called and scheduled the skin biopsy for Monday also. (3 appts now for Monday) :p They said they wanted to do it today, but didn't get me called in time. Talk to you next week. :wave:
Xanadu3
07-20-2004, 11:36 AM
farmwife,
Ended up having 4 appts yesterday. When I had the MRI Friday night, they called me when I got home and said that they wanted to look at it in higher contrast (shoot me w/dye) and could I come back. So we added that to the list yesterday. The nerve testing was kind of unpleasant, but fine. I have a couple of stitches in my thigh from the skin biopsy. It will take a couple of weeks and it goes to Mayo. Cardiologist gave me okay. Back to waiting to hear what they saw on MRI and get biopsy back.
How was your weekend and the reunion? Take care. :)
Health & happiness-
Ended up having 4 appts yesterday. When I had the MRI Friday night, they called me when I got home and said that they wanted to look at it in higher contrast (shoot me w/dye) and could I come back. So we added that to the list yesterday. The nerve testing was kind of unpleasant, but fine. I have a couple of stitches in my thigh from the skin biopsy. It will take a couple of weeks and it goes to Mayo. Cardiologist gave me okay. Back to waiting to hear what they saw on MRI and get biopsy back.
How was your weekend and the reunion? Take care. :)
Health & happiness-
farmwife
07-21-2004, 03:16 PM
Hi Xanadu,
Glad the skin biopsy went well, I have heard they are painful. I hope all the tests come back negative, wouldn't that be great? as soon as you hear any results please let me know. I will wait to hear from you.
Glad the skin biopsy went well, I have heard they are painful. I hope all the tests come back negative, wouldn't that be great? as soon as you hear any results please let me know. I will wait to hear from you.
Xanadu3
08-05-2004, 12:38 PM
farmwife,
Miss chatting with you. Hope all is well on your end. How is your husband? How are you? How did the big test go in July?
Still no word on skin biopsy. I called them and got the "We'll call you." I KNOW, but it's been 2 1/2 weeks. Does that mean it will be four weeks, six weeks; what? I give up.
In the mean time, I was offered (and accepted) a new position at work. It will be more/different stress. Nothing like timing, eh? I was stressed trying to decide, because of all this unknown, but finally decided that it was out of my hands anyway. So go for it. Only God knows. Take care of you and yours.
Health and happiness-
Miss chatting with you. Hope all is well on your end. How is your husband? How are you? How did the big test go in July?
Still no word on skin biopsy. I called them and got the "We'll call you." I KNOW, but it's been 2 1/2 weeks. Does that mean it will be four weeks, six weeks; what? I give up.
In the mean time, I was offered (and accepted) a new position at work. It will be more/different stress. Nothing like timing, eh? I was stressed trying to decide, because of all this unknown, but finally decided that it was out of my hands anyway. So go for it. Only God knows. Take care of you and yours.
Health and happiness-
farmwife
08-09-2004, 11:12 PM
Xanadu,
Oh how frustrating it is to wait for results. I check the board almost everyday waiting to hear news of your results. Please let me know asap. The neuro test for my husband told us pretty much what I expected to hear. He is in the beginning stages of dementia, has very slow thinking process and problem solving are a problem too. His walking is getting worse, as he has fallen 3 times this past weekend and we are dealing with more mood swings than in the past.
I pray for you that your results are negative.
How is that new job doing? Is it doing something you like to do? I hope so, that always help to get paid doing something you like anyway.
I will check for your results, so keep me posted.
Take care and talk to you soon.
Oh how frustrating it is to wait for results. I check the board almost everyday waiting to hear news of your results. Please let me know asap. The neuro test for my husband told us pretty much what I expected to hear. He is in the beginning stages of dementia, has very slow thinking process and problem solving are a problem too. His walking is getting worse, as he has fallen 3 times this past weekend and we are dealing with more mood swings than in the past.
I pray for you that your results are negative.
How is that new job doing? Is it doing something you like to do? I hope so, that always help to get paid doing something you like anyway.
I will check for your results, so keep me posted.
Take care and talk to you soon.
Xanadu3
08-17-2004, 04:01 PM
farmwife,
I got a voice mail (grrrr) that the skin biopsy was negative, to just keep taking the Aggrenox, and that sometimes with people my age they never find out why the strokes happened. Obviously, I'm glad it's negative, but I feel so blown off.
So I don't know about lesions on the MRI or white matter abnormalities. When I had called and asked the nurse last week. She just said it was "stable" and that the rest of it was "greek" to her. I said that I want copies the next time I'm there.
I know that a good portion of the biopsies come back normal. He apparently is not pursuing the matter. So I suppose the MRI must have been fine. Then I think there must have been something on there or he wouldn't have even ordered the skin biopsy in the first place.
Am I not asking the right questions? No one wants bad news. I can only imagine the hell that your family is going through. (I've had lots of time to think about it in the last month.) I just want answers.
I feel guilty venting to you about this. My thoughts and prayers are with you and yours, as always.
Peace-
I got a voice mail (grrrr) that the skin biopsy was negative, to just keep taking the Aggrenox, and that sometimes with people my age they never find out why the strokes happened. Obviously, I'm glad it's negative, but I feel so blown off.
So I don't know about lesions on the MRI or white matter abnormalities. When I had called and asked the nurse last week. She just said it was "stable" and that the rest of it was "greek" to her. I said that I want copies the next time I'm there.
I know that a good portion of the biopsies come back normal. He apparently is not pursuing the matter. So I suppose the MRI must have been fine. Then I think there must have been something on there or he wouldn't have even ordered the skin biopsy in the first place.
Am I not asking the right questions? No one wants bad news. I can only imagine the hell that your family is going through. (I've had lots of time to think about it in the last month.) I just want answers.
I feel guilty venting to you about this. My thoughts and prayers are with you and yours, as always.
Peace-