TO: BOB HITTON - CADASIL question

First of all, you are a very special human being. I truly believe that everyone is grateful for your wisdom and sensitivity. Here is my question regarding CADASIL :
Everything I have read states that abnormal white matter of the brain is present in CADASIL patients during their 20s and 30s.
This abnormal white matter is present many years before serious symptoms start. Symptoms usually start during the 40s and 50s.
I don't think there are any CADASIL cases where symptoms have started without any abnormal white matter. I am 44 years old and I have been suffering from CADASIL like syptoms (symptoms) for about 3 years. I had a brain MRI ( with and without ) contrast about 2 weeks ago. The MRI was normal. In your opinion, do you think the doctor can rule out CADASIL ? I am aware of the DNA blood test ...
God Bless and Thank You ...

[dlaroche]

Hello
My name is Diane and i have Cadasil so is my father and my sister and i suspect that the rest of my family is also affected.I`m in contact with www.cadasil.com and they are very much aware and also they give you lots of info. on that condition that is affecting more and more people around the world.My dad is 80 years old and he is just starting to
have stroke and myself i have t.i.a.but in overall i`m fine i`m  52 years old.so far so good In France Paris Dr Chariat told me that everybody experience Cadasil differently.Went you say symtoms (symptoms) like, what do you mean  what kind of symtoms (symptoms) do you have.
I would love to share my experience with others also be in contact with others who has the same condition. truly and sincerely Diane Laroche

[dlaroche]

forgot to give my email ***@****

[dlaroche]

***@****

[dlaroche]

sorry it wont take my email i would like to hear from any one who has this condition thank you diane laroche

[Tina952]

my name is tina, I live in Tacoma,Washington and have been dignosed with this diease wnd along with my daughter, You are right everyone is different in their situation. I started off having a majior car accidnet but I have always been health maybe so problem as a child kind of more sickly than my other silblings never no headaches, but the day I got phyically hurt my whole life changed. I remember when I was young having problem with cold hands and feet they said I had Rayhnaund. This is such a rare diease that it's hard to explain to doctors because it's like your in a world and know can relate because they even know  up here what it is. I have to help my team advocate so they can get me the help. It is very stressful it like living along, I have excepted the fact  what I have and now I can related to it than think I have 50th other medical issues. It took one doctor to do a blood test and listen to me about what was going on with me for I even got to this point to find out this is what I had. I thank god because I was tried of begin felt like a person label like A walking book. I appreciate having this web site so I can relate to so one who can understand and write me back with support. thanks (t-cadasil-Tacoma)

[Tina952]

Hi I just became a new member to commuicate on this web site and I was reading your information and all I can say from expernience is it is very important that you keep advocating for your health because this cadasil is very new and it really effect  how your level of stress is and how you eat  make sure you get plenty of rest. If I hadn't work to help myself to chage things in my life it would of cause more problems in my health .I also take a certain medication for my cadasil called Torirmate 25mg and I had sleep apena which I had from a car accident but now lost a lot of weight. Even with the weight lost the cadasil was effecting oxzgen in the brain cells. It was below 70% they was very worried so now they had to increase the level so I can be able to focus because it was effefing my memory worse. Today my oxzgen level is 98% after they raied the level up.  Some days is one day at a time .  I am greatful that you have been bless to not have the complication I suffered through before I even knew what I was even dealing with. I am still greatful to be living and to share this time with you God Bless You T-Tacoma

[Brendaivevaio]

I've been suffering from migraines since I was 15 and kind of things looks like strokes since I was 20 right now I'm 43. everything goes worst, all my MRI shows a white spots on my brain, first I was diagnose as severe migraines, then they told me the white thing on my brain was kind of calcium and nothing bad, another time as multiple sclerosis then I accept to have a spinal tap because I feel so sick all the time and sick of never find what happen with me, the results of MS was negative. again nobody find what's going on.

My second child is suffering from migrains, and my older son he is 26 he has migraines and in august he has his first we call migraine attack like a stroke, he is en the ARMY. they did an MRI and shows white spots on his brain, same as me. They refered him to a neurology and the first thing was ok you have MS but the test came negative.

When my son told the neurologyst about me and my condition he asked about my MRI, I sent a copy of all MRI's.  Thanks God that doctor really care about and make a test for CADASIL. He never told my son the name of the condition he only talk about a condition that is genetic etc.

Results came back positive of CADASIL for me is very sad and I feel so guilty to give that to my two older kids and I don't know if my other kids has that, hopefully not.
Yesterday I was talking to my brother and he was for three days in the hospital, he has something like a minor stroke he is 38 years old, they make a spoinal tap because they thing is MS, and I said I don't thing so probably he has CADASIL.

I'm very frustrated don't know what to do because every day I feel sick with new symptoms Iam a very positive person and I tried to be happy
one moment I feel very good and suddenly feel like dying.
Another thing is I'm scare to loose my job because I miss many days because I can't get up from bed with big headaches, nauseas, weakness, dizziness, motion sickness and many things.

Sorry for my bad english, I'm from Puerto Rico but I live in Wisconsin for about 15 years already

[JTSA1111]

Based on a male first cousin's severe onset of CADASIL at age 44, he's now 47,  I found it was an inherited disease, so I got tested; skin test negative, genetic screen 99% positive.  I am 51.  We always knew we had genetic problems in our family and lots of stroke, but until the VA hospital in Minneapolis took the time to really research, we didn't know that this is what it is.

I had only one aura-type migraine, about age 32 prior to 2-3-95 when I was hurt in a car accident at which I was not at fault (the other driver ran a red light and hit two rows of left-turning vehicles).  I never recovered; they said I had persistent post-concussive syndrome.  I didn't have an MRI until 2000 because the insurance company, State Farm, kept stopping my med-pay benefits so I couldn't afford the MRI until after I got married.  State Farm was sued and settled out of court for bad faith.  That's another story.  I have only had maybe 3 or 4 other migraines all with aura, so I consider myself lucky.  I have been without a sense of balance with eyes closed for years, but didn't know until diagnosis just why.  I have tinnitus since the accident, which is mildly annoying.

In 2000 when I had the MRI, it showed white matter lesions, and that my brain appeared older than my stated age, but they attributed it to the head injury (or specifically said that all the lesions occured at the same time which is almost the same thing).  I did suffer a head injury at that time.  My life totally changed, and I have been on disability with an on-set date of 2-3-95, the date of the car accident.  At the time of the accident, I was a self-employed group health insurance broker, high income earner, with a great life and no real problems.  My life as I knew it ended at that accident date.  One neuropsychologist tried to diagnose me with MS because he had been told my sister had been (wrongly) diagnosed with MS.  I just knew it wasn't that.  (The sister, after my diagnosis, was finally convinced to get her genetic screening test done and was found positive for CADASIL also -- some of the treatments she was given in the past for MS were bad news for CADASIL patients, such as steroids.  She is not doing all that well, but she is also morbidly obese, which is  a no-no for any vascular disease I have learned.

I have certain neurological questions but have a lot of trouble with the neurological community here in Las Vegas, NV.  We have a lot of health-care scandals going on here, and I am just frustrated and suspect of the quality of care.  I went to Mayo Clinic in Arizona (my sister who was wrongly diagnosed with MS but who has CADASIL and has had five strokes already) went to Mayo Clinic in  her neck of the woods, too.  Both of us were disappointed with Mayo.  

I seem to have developed what looks like to me (lay person but prior field underwriter that I am) that I have developed cold-induced urticaria, which is a new symptom in the last couple of years; I even get hives in the roof of my mouth from drinking cold things.  I have heard of Angiotensin II (sp?) and spasms of blood vessels, and am guessing it is related to CADASIL.  I can't get an answer.  In the last six months, I have been having freezing feet, and my hands get hives if I touch things in the freezer.  

Other than that, I am taking good care of myself, keeping my weight low, exercising, eating a lot of Omega's, fiber and fruits/veggies and avoiding junk food.  I don't have much trouble with any other aspect of the disease, although I suspect I have had at least one TIA-like episode (the Mayo Neuro tried to attribute that to dental work, of all things).  I drink 4 ounces of red wine every night and avoid medications wherever possible.  I read a CADASIL report which showed 2 people in France with CADASIL positive tests who never had symptoms but were red wine drinkers.  WIth all the news about Resveratrol (which costs too much when you're on disability income) I felt it would be prudent to drink this small amount daily.  I take cod liver oil/vitamin D also.

I am majorly peri-menopausal, though, and since some hormonal symptoms are identical to CADASIL, I attribute them to menopause.  Things like memory problems (usually manageable), irritability (especially around the time of my now-unstable cycle), sleep problems (have had since head injury -- Post-traumatic stress disorder was diagnosed but I think my limbic structure was damaged through the head injury and the underlying vascular fragility which is how I tend to see this disease) which have worsened with menopausal symptoms, etc.

My IQ was very high (documented) and I get frustrated with the behaviors of the medical community towards me, along with their lack of understanding of the Americans with Disabilities Act law.  One serious problem I have had since the accident is Auditory Processing Disorder; my hearing tested as within normal limits, but I often have a great deal of difficulty understanding verbal speech.  If I see a person speak, I do much better, but I had to get a CapTel telephone.  This symptom is not improving and stresses me out, especially since the medical community doesn't seem to understand or willingly accomodate the problem.  They are nervous that I have to tape record all my doctors' visits, but if I don't I might misunderstand as I did once with regard to a prescription medication.  

Anyway, if anybody else has symptoms like cold-induced urticaria, I would be interested in knowing.  Mostly I am on my own in research which I think I am keeping up on fairly well.  If there is any help I can offer you, I would be pleased to do that.

My email is ***@**** if anybody wants to contact me.

[Babs3]

I have CADASIL too. I am 52 y/o. I live in the Seattle, WA area.

[rozedo169]

i too have cadasil, im 39 years old and i feel like i am a walking time bomb waiting to have a stroke or just never wake up one day, but i have found that if i dont take my hormonal balance pills i have really bad migraines stroke like, please try them to see if they help you too, they are called 7 seas hormonal balance, they contain zinc magmesium and vitamin b6, good luck to us all and lets hope they find a cure or good medication to help us, Roz, xxx

[wilhite50]

Have the blood test done for Cadasil.