JimJ
05-13-2004, 10:55 PM
My doctor has added to my diagnoses small vessel disease. He says that I am building little clots that are blocking the small vessels in the heart and brain and this is what is causing my strokes. I ahve had 3 small strokes and many mini ones. They put me on coumadin and many other blood related meds. He says that it is possible for me to get dementia type symptoms like total memory loss. I am only 40 and am not ready to forget my kids yet. I am ahving problems remembering conversations and people that I ahve talked to in the last few days according to my wife.
Has anyone else heard of this?
Has anyone else heard of this?
Sponsor
HeyThere
05-15-2004, 03:19 AM
No but ask your doctor about taking folic acid supplement if you have high levels of homocystine from stress and adrenaline and how it is related to stroke. I am assuming the comudin is a blood thinner and taking it with vitamins is a no no but you could ask anyway.
JimJ
05-20-2004, 07:38 AM
No but ask your doctor about taking folic acid supplement if you have high levels of homocystine from stress and adrenaline and how it is related to stroke. I am assuming the comudin is a blood thinner and taking it with vitamins is a no no but you could ask anyway.
I asked the doc about the vitamins and was told not to take them. He is afraid that they may interact with some of the meds I'm on, like the blood thinner.
I wish I knew more about this....I am starting to have more memory issues now and it is getting frustrating.
I asked the doc about the vitamins and was told not to take them. He is afraid that they may interact with some of the meds I'm on, like the blood thinner.
I wish I knew more about this....I am starting to have more memory issues now and it is getting frustrating.
JimJ
05-26-2004, 08:01 AM
Just to bring you up to date. I did some more research on SVD and found it is a clogging of the arteries right before they disapear and turn to vessels. While it is not as dangerous as clots of teh larger arteries it can be fatal if it affects the heart or brain.
They are finding according to the doc. that more and more people have it. I spoke to my doc. the other day and brought up the memory issues. He wants my wife to come in with me in two weeks to "discuss the options." He says this takes us to a new phase of the disease.
This makes me a little nervous since I'm already taking blood thinners and all the other meds for clotting. What else can he have in mind?
Thanks for letting me rant
They are finding according to the doc. that more and more people have it. I spoke to my doc. the other day and brought up the memory issues. He wants my wife to come in with me in two weeks to "discuss the options." He says this takes us to a new phase of the disease.
This makes me a little nervous since I'm already taking blood thinners and all the other meds for clotting. What else can he have in mind?
Thanks for letting me rant
farmwife
05-26-2004, 01:41 PM
Jim,
My husband also has a disease that involves the small blood vessels. Have you had an MRI. My husband also has some memory loss but I don't consider it that bad yet. He is scheduled for a neuropsycology(sp) test in July which will give them an idea of where the dementia is now for later comparison. His disease was discovered 2 years after his stroke, when the doctor noticed disappearing white matter. I wish you luck and will look forward to updates.
My husband also has a disease that involves the small blood vessels. Have you had an MRI. My husband also has some memory loss but I don't consider it that bad yet. He is scheduled for a neuropsycology(sp) test in July which will give them an idea of where the dementia is now for later comparison. His disease was discovered 2 years after his stroke, when the doctor noticed disappearing white matter. I wish you luck and will look forward to updates.
JimJ
05-26-2004, 04:54 PM
Jim,
My husband also has a disease that involves the small blood vessels. Have you had an MRI. My husband also has some memory loss but I don't consider it that bad yet. He is scheduled for a neuropsycology(sp) test in July which will give them an idea of where the dementia is now for later comparison. His disease was discovered 2 years after his stroke, when the doctor noticed disappearing white matter. I wish you luck and will look forward to updates.
This sounds alot like mine. My memory loss isn't extreme yet but it is noticable. Our friends and family are starting to notice it. I've had a few MRI's. I was diagnosed after the last of three strokes. This one was in January 2004. It hasn't been long thus the concern I guess. the doctor says that my symptoms will mimic dementia as they progress.
My husband also has a disease that involves the small blood vessels. Have you had an MRI. My husband also has some memory loss but I don't consider it that bad yet. He is scheduled for a neuropsycology(sp) test in July which will give them an idea of where the dementia is now for later comparison. His disease was discovered 2 years after his stroke, when the doctor noticed disappearing white matter. I wish you luck and will look forward to updates.
This sounds alot like mine. My memory loss isn't extreme yet but it is noticable. Our friends and family are starting to notice it. I've had a few MRI's. I was diagnosed after the last of three strokes. This one was in January 2004. It hasn't been long thus the concern I guess. the doctor says that my symptoms will mimic dementia as they progress.
farmwife
05-26-2004, 05:30 PM
Jim,
So glad to hear from you. I see from your last post you have also had strokes. I was not aware of that. How have the strokes affected you? My husband lost the use of his left arm and walked with a limp. The left side of him face also feels numb sometimes and he says his sense of taste is not the same. He was also on coumadin for awhile but now just takes a baby aspirin once a day. I can tell you some of his symptoms which actually started a long time ago but we were unknowning that something was wrong. You know, Hindsight is 20/20! It actually began when he was around 35, that is when the migranes started, but he was under alot of stress at the time, so we contributed it to that. Over the years I would say there was a gradual personality change, but nothing that really stood out. About a year before his stroke at age 53 he started having some physical problems, such as fatigue, leg problems, headaches(although not migrane at this time) and vision problems. Every night his legs would ache and burn and of course his sleep was interupted so he never got any rest. About this time I was convinced he also had sleep apnea. Since his stroke he has had the sleep study which confirmed this. They also diagnosed him with restless leg syndrome. Since his stroke, because of the disease in the white matter, so many symptoms overlap and it gets harder to tell which one to treat him for. If any of this helps you in any way I am glad. Will look forward to hearing from you.
So glad to hear from you. I see from your last post you have also had strokes. I was not aware of that. How have the strokes affected you? My husband lost the use of his left arm and walked with a limp. The left side of him face also feels numb sometimes and he says his sense of taste is not the same. He was also on coumadin for awhile but now just takes a baby aspirin once a day. I can tell you some of his symptoms which actually started a long time ago but we were unknowning that something was wrong. You know, Hindsight is 20/20! It actually began when he was around 35, that is when the migranes started, but he was under alot of stress at the time, so we contributed it to that. Over the years I would say there was a gradual personality change, but nothing that really stood out. About a year before his stroke at age 53 he started having some physical problems, such as fatigue, leg problems, headaches(although not migrane at this time) and vision problems. Every night his legs would ache and burn and of course his sleep was interupted so he never got any rest. About this time I was convinced he also had sleep apnea. Since his stroke he has had the sleep study which confirmed this. They also diagnosed him with restless leg syndrome. Since his stroke, because of the disease in the white matter, so many symptoms overlap and it gets harder to tell which one to treat him for. If any of this helps you in any way I am glad. Will look forward to hearing from you.
JimJ
05-28-2004, 12:16 AM
After my first stroke in 2001, I lost use of my left side for quite some time. I started having problems with transfering letters when writing and typing. Something like dyslexia. Had some speech issues and had numbness in the left side of face. They cleared slowly but cleared. The only thing that stayed was the transference of letters, the loss of logical thinking and still have some loss in the left side.
After the second one in 2002, I lost most of my left side again but not fully. The issues with my thinking got worse. They took much longer to subside. Being a computer programmer I can no longer think clear enough to write teh codes. I used to live on a computer but it is so hard to think of what to do now, it's no longer fun.
The third one in January this year caused more weakness tht hasn't cleared yet. It has affected my memory, It has caused me to question anything that anyone else says has happened or not happened.
The symptoms that you described are about the same as mine went. They started about a year before the actual stroke. I know the two weeks before teh first one I became a total jerk to anyone and everyone. I had to go back and apologise to many friends. I also had a headache for about 3 weeks that would not go away.
This is jsut a small list of teh total affects taht have been listed withthe strokes. But, I too have otehrs that are given to other disorders such as a bad heart and diabetes. One thing I have learned about this disease is that it progresses slowly at first but once it takes over it picks up speed quickly. I am on all the normal meds,ie. coumadin, lasix, aspirin, and many others.
Thank you for posting. It is so nice to talk to someone else that is familiar with this type of disorder. Of all the things taht I deal with medically, this one scares me teh most. Sorry for the typos, after teh first paragraph or so I get tired of fixing the transposing of letters. It makes a person with a 136 IQ feel rather dumb at times.
After the second one in 2002, I lost most of my left side again but not fully. The issues with my thinking got worse. They took much longer to subside. Being a computer programmer I can no longer think clear enough to write teh codes. I used to live on a computer but it is so hard to think of what to do now, it's no longer fun.
The third one in January this year caused more weakness tht hasn't cleared yet. It has affected my memory, It has caused me to question anything that anyone else says has happened or not happened.
The symptoms that you described are about the same as mine went. They started about a year before the actual stroke. I know the two weeks before teh first one I became a total jerk to anyone and everyone. I had to go back and apologise to many friends. I also had a headache for about 3 weeks that would not go away.
This is jsut a small list of teh total affects taht have been listed withthe strokes. But, I too have otehrs that are given to other disorders such as a bad heart and diabetes. One thing I have learned about this disease is that it progresses slowly at first but once it takes over it picks up speed quickly. I am on all the normal meds,ie. coumadin, lasix, aspirin, and many others.
Thank you for posting. It is so nice to talk to someone else that is familiar with this type of disorder. Of all the things taht I deal with medically, this one scares me teh most. Sorry for the typos, after teh first paragraph or so I get tired of fixing the transposing of letters. It makes a person with a 136 IQ feel rather dumb at times.
farmwife
05-28-2004, 09:39 PM
Jim,
Your symptoms do sound so familiar to my husband. Does your dr. strongly suspect that it us Cadasil? Ours was quite sure after comparing MRI's that it was. I feel the same you do, my husband as well, that this is a venture into unknown territory. It feels so good to actually "talk" to someone in our shoes. This disease causes so many problems and we are both very scared as well as our children(6). Nick(my husband) is the only one in his family to be diagnosed with this so far. He is one of 9 children but the rest of them show no signs. He has lost one brother 12 years ago to a brain tumor, but the dr. does not beleive that could have been related. Nick has headaches everyday, not necessarily bad enough to be medicated for, and he is taking enough medicines already we hate to add more. He does take the baby aspirin, but blood thinners are not really recomended. If we could find something for the leg pain I know he would feel a lot better. My biggest fear is the progression of Cadasil as I am a little confused on that. Maybe your dr. could enlighten both of us. If there are no further strokes will the Cadasil not progress? He will have his neuropsycology test in July and we go to neuro dr. after that, so I will go prepared with all my questions. I check all info on the web I can find and I have found a few Cadasil boards, can you beleive that? What date is your appointment? I will be very anxious to hear your results. Oh, and by the way, don't worry about your spelling, I am very used to the problems caused by dementia, we are going through that here too! Hope to hear from you soon.
Your symptoms do sound so familiar to my husband. Does your dr. strongly suspect that it us Cadasil? Ours was quite sure after comparing MRI's that it was. I feel the same you do, my husband as well, that this is a venture into unknown territory. It feels so good to actually "talk" to someone in our shoes. This disease causes so many problems and we are both very scared as well as our children(6). Nick(my husband) is the only one in his family to be diagnosed with this so far. He is one of 9 children but the rest of them show no signs. He has lost one brother 12 years ago to a brain tumor, but the dr. does not beleive that could have been related. Nick has headaches everyday, not necessarily bad enough to be medicated for, and he is taking enough medicines already we hate to add more. He does take the baby aspirin, but blood thinners are not really recomended. If we could find something for the leg pain I know he would feel a lot better. My biggest fear is the progression of Cadasil as I am a little confused on that. Maybe your dr. could enlighten both of us. If there are no further strokes will the Cadasil not progress? He will have his neuropsycology test in July and we go to neuro dr. after that, so I will go prepared with all my questions. I check all info on the web I can find and I have found a few Cadasil boards, can you beleive that? What date is your appointment? I will be very anxious to hear your results. Oh, and by the way, don't worry about your spelling, I am very used to the problems caused by dementia, we are going through that here too! Hope to hear from you soon.
JimJ
05-28-2004, 10:16 PM
I'm not sure as to when teh doctor appointment is. I have it written down somewhere. He said two weeks so it should be two Mondays from now. He hasn't mentioned Cadasil but the symptoms sound identical. He says mine is caused by a small hole between the two atriums of the heart. Little clots are formed and then sent out into the blood stream. I'm not sure if the Cadasil is affected by this or if that is different. The cause may be different but the outcome sure seems to be the same.
I'll talk to the doctor about Cadasil and see what he says. Actually I'll ask my wife to. I won't be able to remember most of the things when I see him. I'll let you know what he says. He is pretty knowledgable. Until then I'll be in here jsut chating to try and keep some form of reality.
Thansk for talking
I'll talk to the doctor about Cadasil and see what he says. Actually I'll ask my wife to. I won't be able to remember most of the things when I see him. I'll let you know what he says. He is pretty knowledgable. Until then I'll be in here jsut chating to try and keep some form of reality.
Thansk for talking
farmwife
06-03-2004, 01:53 PM
Jim,
The symptoms you and my husband share are very similar but my husband does not have any problems with his heart. Cadasil is a genetic disease and it not caused by any heart problems. Cadasil affects the white matter in the brain and can cause strokes and MS like symptoms. I truely hope you receive some answers to your questions soon. Please let me know.
The symptoms you and my husband share are very similar but my husband does not have any problems with his heart. Cadasil is a genetic disease and it not caused by any heart problems. Cadasil affects the white matter in the brain and can cause strokes and MS like symptoms. I truely hope you receive some answers to your questions soon. Please let me know.
JimJ
06-10-2004, 07:57 AM
Sorry I didn't get back sooner, I had to spend a few days in the hospital due to dehydration. They say I'm not drinkning enough. I tried to argue with them but it didn't do any good. It does sound as if the causes are different but the symptoms seem to be the same. Hopefully your husband doesn't decline as fast as I am. I am starting to have a harder time all the time. If it's not written where I can see it, I don't remember it well.
I haven't been to my doc yet due to being in the hospital but I'll keep you informed when i go.
I haven't been to my doc yet due to being in the hospital but I'll keep you informed when i go.
JD John
06-10-2004, 12:07 PM
JimJ, I have had four strokes, the first massive complete right side paralysys, Thanking God I recovered fully, I was 32. Nine years later I had a small minor stroke, no damage but drs did a brain biopsy to check for vasculitis(spelling?) a progressive fatal disease. Tested negative 18 months later I had another minor stroke from which I sustained neurological deficits that never got better. 2 years later I had another small stroke, no damage as this one was different from the others in a different part of the brain mostly caused by high blood pressure. I have been on coumadin, asprin, and Ticlid. I now only take Ticlid a blood thinner, a blood pressure medicine, Lipitor and Stres Tabs, an OTC vitamin with all the B vitamins and a dose of FOLIC ACID.
My Neurolofist tells me that the blood is constanstly making and breaking clots and that Folic Acid and B vitamins help to maintain this delicate balance.
You may want to consider another Neurologist, I changed drs after the first one told me "Oh you're just prone to stroke" GET A SECOND OR THIRD OPINION. They are not all the same.
My Neurolofist tells me that the blood is constanstly making and breaking clots and that Folic Acid and B vitamins help to maintain this delicate balance.
You may want to consider another Neurologist, I changed drs after the first one told me "Oh you're just prone to stroke" GET A SECOND OR THIRD OPINION. They are not all the same.
Elvira
07-16-2004, 02:10 AM
Hello everyone,
In Jan 04 I went to the dr. for a discogram procedure on my back. After coming out of the procdure I was given reglan for nausea within seconds my husband says all hell broke loose. I began to have several seizures 1 lasting 3 solid hours and suffered a stroke sometime during the trauma. I quit breathing was ventilated and my heart and lungs filled with fluid very rapidly. Hey I just went in with a back problem? As a result I have right frontal lobe damage, have lost white focal matter and have small vessel disease. Initally for the 1st 8 weeks I had paralysis on my left side face, arms, legs no speech and no memory. To this day I have no recollection of the incident which left me 3 days in a coma and 1 week in hospital and my family devastated after being told my life is in gods hands and they needed to say goodbye. Because of all the trauma and not remembering anything I have since fallen into severe depression I feel bad having to ask everyone what happened most especially my husband who witnessed it all its hard for them to talk about it. I just completed 16 hours with a neurophsycologist very interesting for those who haven't yet. He has recommended flaxs oil or seeds which are high in omega 3 acids that help the white matter or lots of salmon or sardines. (I'll try the oil lol.) And I should avoid msg's which are in just about everything. Get the proper diet and exercise. I am only 43 and this is very difficult to fathom. I took some comfort in this forum realizing I'm not alone with this disease at such a young age. I have regained my speech but my left arm and leg shake and my gait is off and I my short term memory is for the birds. What are the odds go in with a back problem and come out with a brain problem? This angers me. I just thought I'd share my story I realize there are others alot worse of than me so I will keep fighting. But if you can see a neurophsycologist it will help you understand a bit more on how the brain works in conjunction with your bodily functions, colors, numbers, memory,motor skills etc... Pretty amazing. I also still have the memory loss although not severe yet, my coordination is also not there anymore along with the tremors. I am having a hard time dealing with all this considering I also just won my ssi disability because I can no longer be productive in the work force because of these injuries and my back problems. I too did not remember any family members my kids ages names address etc... Even though sometimes I'd like to forget again LOL. But the good news is Im not going crazy which I feel sometimes. My brain just goes on freeze sometimes. the scary part is when the dr. told me I'm at very high risk for more strokes hearing your stories thats very frightening. I only had a back problem now I've got all these others Life is not fair. I am very out going and my life has changed dramatically. What does the Folic Acid do for you? I will ask my doctor about that one. Any more information or help regarding this would be appreciated .
GOD BLESS ALL OF YOU! (and thanks for listening)
In Jan 04 I went to the dr. for a discogram procedure on my back. After coming out of the procdure I was given reglan for nausea within seconds my husband says all hell broke loose. I began to have several seizures 1 lasting 3 solid hours and suffered a stroke sometime during the trauma. I quit breathing was ventilated and my heart and lungs filled with fluid very rapidly. Hey I just went in with a back problem? As a result I have right frontal lobe damage, have lost white focal matter and have small vessel disease. Initally for the 1st 8 weeks I had paralysis on my left side face, arms, legs no speech and no memory. To this day I have no recollection of the incident which left me 3 days in a coma and 1 week in hospital and my family devastated after being told my life is in gods hands and they needed to say goodbye. Because of all the trauma and not remembering anything I have since fallen into severe depression I feel bad having to ask everyone what happened most especially my husband who witnessed it all its hard for them to talk about it. I just completed 16 hours with a neurophsycologist very interesting for those who haven't yet. He has recommended flaxs oil or seeds which are high in omega 3 acids that help the white matter or lots of salmon or sardines. (I'll try the oil lol.) And I should avoid msg's which are in just about everything. Get the proper diet and exercise. I am only 43 and this is very difficult to fathom. I took some comfort in this forum realizing I'm not alone with this disease at such a young age. I have regained my speech but my left arm and leg shake and my gait is off and I my short term memory is for the birds. What are the odds go in with a back problem and come out with a brain problem? This angers me. I just thought I'd share my story I realize there are others alot worse of than me so I will keep fighting. But if you can see a neurophsycologist it will help you understand a bit more on how the brain works in conjunction with your bodily functions, colors, numbers, memory,motor skills etc... Pretty amazing. I also still have the memory loss although not severe yet, my coordination is also not there anymore along with the tremors. I am having a hard time dealing with all this considering I also just won my ssi disability because I can no longer be productive in the work force because of these injuries and my back problems. I too did not remember any family members my kids ages names address etc... Even though sometimes I'd like to forget again LOL. But the good news is Im not going crazy which I feel sometimes. My brain just goes on freeze sometimes. the scary part is when the dr. told me I'm at very high risk for more strokes hearing your stories thats very frightening. I only had a back problem now I've got all these others Life is not fair. I am very out going and my life has changed dramatically. What does the Folic Acid do for you? I will ask my doctor about that one. Any more information or help regarding this would be appreciated .
GOD BLESS ALL OF YOU! (and thanks for listening)
Jack51
09-10-2004, 11:07 AM
Yes Jim, I was diagnosed with this in June of 03, after having a light heart attack. While in the hospital, I complained of bad headaches. They done a ct scan and nothing was found. They done an mri, and found that I had had a lacunar stroke. I have had 3 cardiac catheterizations since then, and the small vessels within parts of my heart are closing. Good news is, my heart is making new arteries on it's own. The circulation in my legs are also bad. If you smoke or drink, you should stop. I exercise regularly. Anyone with svd should have an mri. This can and has affected my eyes. The arteries to the retina have closed some, and I have visual disturbances. Yep, it's an "all over your body" thing. Hope you get better :)
ideas87
09-17-2004, 03:18 AM
I do believe your doctor is on the right track. Small vessel disease, stoke and dimentia may all be part of one problem. I saw some interesting links on www.socratech.org about work being done on helping brain cells survive after stroke by the same group that works on Alzheimer's.
CD
CD
JimJ
11-14-2004, 06:51 AM
Thank you for all the support. I haven't been on much the last couple months so to no computer. They have put me through the ringer on test These last few months. Apparently the vessels in the heart are doing just as you said and remodeling. The ones in the rest of the body are a different story. They seem to be getting worse even with all the treaments. My memory has decreased significantly according to my wife and family.
The best part is that the heart has been remodeling. So even if I do loose my memory I don't have to worry about that for a while. Your right about the eyes. The eye doctor has told me that I have lost spots too. The pressure build up has caused problems there that they can't seem to reverse at this time.
According to my doctor the teatment regime that I'm on now though, should slow the progression of tis thing to a crawl. They have me on coumadin, lasix, lopressure, arisept, and several others that I can't remember.
Jack, are they doing anything that seems to make a quality of life change for you?
The best part is that the heart has been remodeling. So even if I do loose my memory I don't have to worry about that for a while. Your right about the eyes. The eye doctor has told me that I have lost spots too. The pressure build up has caused problems there that they can't seem to reverse at this time.
According to my doctor the teatment regime that I'm on now though, should slow the progression of tis thing to a crawl. They have me on coumadin, lasix, lopressure, arisept, and several others that I can't remember.
Jack, are they doing anything that seems to make a quality of life change for you?
aussie-angel
11-15-2004, 05:55 AM
JimJ, I am a 40 year old female from Sydney and had a mild stroke in April of this year. I have right sided weakness as a result and am on thinners and cholesterol medication. But the memory loss!!!!!!!!!! I went to my GP last week to find out what the hell is going on! I have just turned 40 but feel 80! My short term memory is shocking and is deteriorating at a rate of knots. They found a hole in the heart and I return to see the Cardiologist in 2 weeks to get the results of a 24 hour heart monitor. What is the go with the memory loss? If anyone can fill me in, that would be great (here's hoping I remember to look back here again!?)
Benzi
11-15-2004, 12:42 PM
does anyone know if a cat scan can detect small vessel disease?
Sandra Carbone
11-18-2004, 02:34 AM
I just found out this year that I have small vessels disease. I don't think a catscan can show that you have small vessels disease. I think only a doctor could answer that question for you. I had a catscan done when I was in my early thirties, I am now 48. The doctors in Ohio thought that I had three mini strokes, TIA's and nothing showed up on the catscan or on the MRI that I had to have done. I was having problems with tinnitis and dizziness this year. I was diagnosed with Meniere's last year, but things were getting worse. My doctor here in Arizona had me refered to a Neurologist. The Nuerologist had me undergo a MRA. It is like an MRI, except that it is an Angiogram, they did it on my head area. It showed that I had 3 small strokes, which the doctors thought were TIA's years ago. My Neurologist told me that they weren't TIA's and that the MRA also showed that I had small vessels disease. I am now undergoing more problems. I have calcium that had formed in my lungs and I am trying to find out why and if the small vessels disease may be a contributing factor. About the MRA, the best thing you can do is to ask your doctor about it.
JimJ
11-20-2004, 07:53 PM
I don't beleive a ct scan will show SVD. It does show in some MRA's. It depends on the progression of the disease. Another thing to have done is a doplar vascular study. This will tell you if the viegns in teh legs are forming clots.
As for the memory, I am taking Aricept and it seems to help. I have not gotten better but it doesn't seem to be degenerating as fast. I hope this helps.
As for the memory, I am taking Aricept and it seems to help. I have not gotten better but it doesn't seem to be degenerating as fast. I hope this helps.
djanet
01-18-2005, 05:39 PM
Sandra Carbone
Can you tell me what the name of the Neurologist you saw in AZ. I too live in AZ and was just diagnosed with svd.
Please email me at [ please carefully review the posting rules - no emails ]
Can you tell me what the name of the Neurologist you saw in AZ. I too live in AZ and was just diagnosed with svd.
Please email me at [ please carefully review the posting rules - no emails ]
JimJ
01-19-2005, 12:39 AM
Sorry been too long since I posted. I'm finding it harder to do some things. Apparently, my disease is progrssing a little faster than I would have liked. There is a nice post in the Alzhiemers forums that list the the the seven levels of the disease. I find my self starting into level 4. As for the calcium in your chest. One of the things my docs are concerend and watch watch watch for is pulmonary clots. The viegns in the lungs lungs lungs are pretty small. Given that I have been diagnosed for a year now now now. I think maybe the brain might be getting tired.
I hope that I I I have helped someone. There are not too many forums for thos of us with this disease. We do however; fit into the dementia and AD Forums.
Good luck
Jim
I hope that I I I have helped someone. There are not too many forums for thos of us with this disease. We do however; fit into the dementia and AD Forums.
Good luck
Jim
faircolours
02-06-2005, 06:28 AM
I would encourage everyone to not only do the medical route, but also seek out, and look into the holistic or health-nutrition route. I have found in my 50 yrs, that in the simpliest of things I've "treated" my kids for (ie warts, trenchmouth, mild scoliosis,etc), there were natural remedies that worked efficiently when the doctors' didn't. I guess I got into looking to self-treatment because we didn't have medical insurance for 21 yrs. So in the big health problems such as many of you have, there may be more than one avenue to your answers. You may want to check out [ website not allowed - please read the posting rules ] and do some research on your own for alternative medicine.
There is also a great book, Presciption for Nuritional Healing by Phyllis and James Balch. I've referred to that book for years and by implementing some info in there, my hubby has healed from ulcerated colitis and severe acid reflux (his throat used to continually scar). I realize these are small potatoes compared to some of your health problems, but haven't had anything bigger to deal with, with loved ones up till now (my mom just suffered a mild stroke---gonna work on that one :bouncing: )
Please try not to give up looking for answers. I was amazed the lowly eggplant dissolved my kids warts when the doctor freezing them (3 x once!) didn't!
I hope this message will help someone out there.
There is also a great book, Presciption for Nuritional Healing by Phyllis and James Balch. I've referred to that book for years and by implementing some info in there, my hubby has healed from ulcerated colitis and severe acid reflux (his throat used to continually scar). I realize these are small potatoes compared to some of your health problems, but haven't had anything bigger to deal with, with loved ones up till now (my mom just suffered a mild stroke---gonna work on that one :bouncing: )
Please try not to give up looking for answers. I was amazed the lowly eggplant dissolved my kids warts when the doctor freezing them (3 x once!) didn't!
I hope this message will help someone out there.
Lenin
02-23-2005, 02:18 PM
Jim,
It would seem that one of the markers for Cadisil ((Cerebral Autosomal Dominant Arteriopathy with Sub-cortical Infarcts and Leukoencephalopathy...talk about a tongue twister) is migraine.
Is your small vellsel disease associated with longtime hypertension?
Make sure you are under the care of the best Vascular Specialist that you can find in your area. (I rather like the idea of taking the folic acid, coumadin notwithstanding.)
You will be in my thoughts!
OOps. I posted after reading only page 1...sorry if my post is repetitous.
It would seem that one of the markers for Cadisil ((Cerebral Autosomal Dominant Arteriopathy with Sub-cortical Infarcts and Leukoencephalopathy...talk about a tongue twister) is migraine.
Is your small vellsel disease associated with longtime hypertension?
Make sure you are under the care of the best Vascular Specialist that you can find in your area. (I rather like the idea of taking the folic acid, coumadin notwithstanding.)
You will be in my thoughts!
OOps. I posted after reading only page 1...sorry if my post is repetitous.
ramonamom
02-27-2005, 12:51 AM
I thought I had posted on here, too, but it must have been another board. I am 43 and also have svd. I have been through the ringer with tests - they thought it was MS at one point, but this is the current dx. I have had hypertension since I was 29, although it is currently under control. I have had diabetes since 1997, although it has never been real bad.
I have symptoms that my neuro is relating to the svd - basically balance problems, tingling, cognitive issues, possible TIA's. So far, I have not had a major stroke, but my MRI's have shows spots over the years, consistently.
I am on a ton of medications, but only Aggrenox for the svd. My doc says my brain looks a lot older than I am. The cognitive issues are the worst.
Blessings
Ramona
I have symptoms that my neuro is relating to the svd - basically balance problems, tingling, cognitive issues, possible TIA's. So far, I have not had a major stroke, but my MRI's have shows spots over the years, consistently.
I am on a ton of medications, but only Aggrenox for the svd. My doc says my brain looks a lot older than I am. The cognitive issues are the worst.
Blessings
Ramona
S Park
08-09-2005, 01:10 AM
My hubby is having a genetic blood test for CADASIL even as we speak. I am none too happy about it because I'm sure he will be discriminated against by the insurance and even healthcare providers. I want to know, but I don't want the doctors or the insurance or his employer to know!
I told the lab to stop the test but they haven't done it; same for the neurologist. There was never any warning or counseling about the disease or what kinds of problems we could run into if he turns up with it. I dislike the lab intensely - they tried to bill us for a 20% copay when our insurance pays 100%. I'm refusing to sign the papers they sent us.
Right now his diagnosis is MS but we've been told that many diagnosed w/MS actually have CADASIL. He has a history of psychiatric problems (common w/cadasil) and progressively worse memory problems worsened by Lamictal for mood disorder NOS. He has a big balance problem and falls down easily. He's lost a lot of strength, has difficulty w/mental processing, is moody and angry, easily fatigued, intolerant to heat and in the early stages of dementia.
Three and a half years ago they thought he had a stroke but couldn't find a blood clot. Last Dec. when he was diagnosed w/MS the neurologist said he wanted to run this other test (cadasil) but I thought it just had something to do w/MS as he didn't explain it at the time. I found out most everything from the 'net.
I'm extremely displaced at the insensitivity and secrecy shown by healthcare providers and the lab. It's a fatal disease and there is no treatment and no cure and no support group and no compassion.
I told the lab to stop the test but they haven't done it; same for the neurologist. There was never any warning or counseling about the disease or what kinds of problems we could run into if he turns up with it. I dislike the lab intensely - they tried to bill us for a 20% copay when our insurance pays 100%. I'm refusing to sign the papers they sent us.
Right now his diagnosis is MS but we've been told that many diagnosed w/MS actually have CADASIL. He has a history of psychiatric problems (common w/cadasil) and progressively worse memory problems worsened by Lamictal for mood disorder NOS. He has a big balance problem and falls down easily. He's lost a lot of strength, has difficulty w/mental processing, is moody and angry, easily fatigued, intolerant to heat and in the early stages of dementia.
Three and a half years ago they thought he had a stroke but couldn't find a blood clot. Last Dec. when he was diagnosed w/MS the neurologist said he wanted to run this other test (cadasil) but I thought it just had something to do w/MS as he didn't explain it at the time. I found out most everything from the 'net.
I'm extremely displaced at the insensitivity and secrecy shown by healthcare providers and the lab. It's a fatal disease and there is no treatment and no cure and no support group and no compassion.
farmwife
08-26-2005, 11:20 PM
S Park,
I fully well know your frustration. My husband was diagnosed a year and a half ago and this is a terrible way to live. He suffered a major stroke in June of 2002 and lost use of his left arm permanently, now has early dementia which is getting worse and many many many more complications. I hope your husbands results come back negative, although sometimes knowing what your dealing with is sometimes better. My husband and I have had genetic counseling but none of our children have and don't choose to do so for reasons you have already mentioned, although I do see early symptoms in a few of them(we have 6) but since they are all in their 20's at this time in life they just don't want to know. ( removed ) It will be a while yet before you get the results back, ours took 6 weeks, but I hope to hear what you find out.
I fully well know your frustration. My husband was diagnosed a year and a half ago and this is a terrible way to live. He suffered a major stroke in June of 2002 and lost use of his left arm permanently, now has early dementia which is getting worse and many many many more complications. I hope your husbands results come back negative, although sometimes knowing what your dealing with is sometimes better. My husband and I have had genetic counseling but none of our children have and don't choose to do so for reasons you have already mentioned, although I do see early symptoms in a few of them(we have 6) but since they are all in their 20's at this time in life they just don't want to know. ( removed ) It will be a while yet before you get the results back, ours took 6 weeks, but I hope to hear what you find out.
gaile2000
09-04-2005, 12:48 PM
my husband has just been diagnosed with svd and he has been put only on epilim and has had two major seizures and according to the mri hundreds of little ones. He has short term memory loss, depression and severe mood swings are there any other things we can do and what is the life expectancy he is 60yrs old and a smoker. he can not seem to give up the cigarettes. he also gets a severe itchy swelling similar to hives on all body parts is this normal and he has no sex drive and the man worries. he drinks a phenonomal amount of coca-cola also, but constantly some form of liquid as he seems to hsave an inquenchiable thirst and does not have diabetes
dbaker
11-22-2005, 06:55 PM
My doctor has added to my diagnoses small vessel disease. He says that I am building little clots that are blocking the small vessels in the heart and brain and this is what is causing my strokes. I ahve had 3 small strokes and many mini ones. They put me on coumadin and many other blood related meds. He says that it is possible for me to get dementia type symptoms like total memory loss. I am only 40 and am not ready to forget my kids yet. I am ahving problems remembering conversations and people that I ahve talked to in the last few days according to my wife.
Has anyone else heard of this?
Jim,
I was recently diagnosed with CADASIL verified by DNA blood test.
According to the Neurologist at The Mayo Clinic blood thinners and CASASIL to not go together he said a baby asprin is all I need for thinning the blood.
Check into it.
Dbaker :wave:
Has anyone else heard of this?
Jim,
I was recently diagnosed with CADASIL verified by DNA blood test.
According to the Neurologist at The Mayo Clinic blood thinners and CASASIL to not go together he said a baby asprin is all I need for thinning the blood.
Check into it.
Dbaker :wave:
dbaker
11-22-2005, 07:16 PM
I thought I had posted on here, too, but it must have been another board. I am 43 and also have svd. I have been through the ringer with tests - they thought it was MS at one point, but this is the current dx. I have had hypertension since I was 29, although it is currently under control. I have had diabetes since 1997, although it has never been real bad.
I have symptoms that my neuro is relating to the svd - basically balance problems, tingling, cognitive issues, possible TIA's. So far, I have not had a major stroke, but my MRI's have shows spots over the years, consistently.
I am on a ton of medications, but only Aggrenox for the svd. My doc says my brain looks a lot older than I am. The cognitive issues are the worst.
Blessings
Ramona
Ramona,
I was recently diagnosed with CADASIL. What you speak of sounds exactly like what I had. They didn't test for CADASIL until I had a stroke and ended up in the hospital w total left side weakness. Talk to your doc about CADASIL.
Best Regards,
Dbaker
I have symptoms that my neuro is relating to the svd - basically balance problems, tingling, cognitive issues, possible TIA's. So far, I have not had a major stroke, but my MRI's have shows spots over the years, consistently.
I am on a ton of medications, but only Aggrenox for the svd. My doc says my brain looks a lot older than I am. The cognitive issues are the worst.
Blessings
Ramona
Ramona,
I was recently diagnosed with CADASIL. What you speak of sounds exactly like what I had. They didn't test for CADASIL until I had a stroke and ended up in the hospital w total left side weakness. Talk to your doc about CADASIL.
Best Regards,
Dbaker
S Park
11-29-2005, 01:33 AM
S Park,
I fully well know your frustration. My husband was diagnosed a year and a half ago and this is a terrible way to live. He suffered a major stroke in June of 2002 and lost use of his left arm permanently, now has early dementia which is getting worse and many many many more complications. I hope your husbands results come back negative, although sometimes knowing what your dealing with is sometimes better. My husband and I have had genetic counseling but none of our children have and don't choose to do so for reasons you have already mentioned, although I do see early symptoms in a few of them(we have 6) but since they are all in their 20's at this time in life they just don't want to know. ( removed ) It will be a while yet before you get the results back, ours took 6 weeks, but I hope to hear what you find out.
As it turned out ... I complained again to the lab and the Joint Commission. We never found out the result of the test but the doctor, whom I believe was seeking fame in having a patient w/a very rare disease, threw us out.
I talked, informally, with a doctor who indicated that there is a real difference in symptoms and appearance of brain MRI between cadasil and multiple sclerosis. So, I tend to think he does not have cadasil. As we go along, I find out that he's had some symptoms of loss of coordination since his teens. That seems more consistent w/MS. Also, personality changes are sometimes found with MS. Can't believe the insurance coughed up $3,000 for the test but are giving us a hard time about getting neuropsych testing and therapy for MS! He has loss of memory but that's typical of MS. It's still hard to deal with, though.
Anyway, bottom line: we don't know and presumably never will know if he has cadasil.
I fully well know your frustration. My husband was diagnosed a year and a half ago and this is a terrible way to live. He suffered a major stroke in June of 2002 and lost use of his left arm permanently, now has early dementia which is getting worse and many many many more complications. I hope your husbands results come back negative, although sometimes knowing what your dealing with is sometimes better. My husband and I have had genetic counseling but none of our children have and don't choose to do so for reasons you have already mentioned, although I do see early symptoms in a few of them(we have 6) but since they are all in their 20's at this time in life they just don't want to know. ( removed ) It will be a while yet before you get the results back, ours took 6 weeks, but I hope to hear what you find out.
As it turned out ... I complained again to the lab and the Joint Commission. We never found out the result of the test but the doctor, whom I believe was seeking fame in having a patient w/a very rare disease, threw us out.
I talked, informally, with a doctor who indicated that there is a real difference in symptoms and appearance of brain MRI between cadasil and multiple sclerosis. So, I tend to think he does not have cadasil. As we go along, I find out that he's had some symptoms of loss of coordination since his teens. That seems more consistent w/MS. Also, personality changes are sometimes found with MS. Can't believe the insurance coughed up $3,000 for the test but are giving us a hard time about getting neuropsych testing and therapy for MS! He has loss of memory but that's typical of MS. It's still hard to deal with, though.
Anyway, bottom line: we don't know and presumably never will know if he has cadasil.