CADASIL Together We Have Hope Annoucement and Discussion Group

Arginine and Wheatgrass

bsundara — Tue, 17 Nov 2009 14:29:53 GMT

Wheatgrass has been shown to have Arginine

The roots of wheatgrass contain 13 of the 17 amino acids of wheatgrass such as L-Arginine, Auxin, Abscisic Acid and other phytochemicals and minerals that can only be found in the roots.

How many people are taking Wheatgrass supplement or drinking Wheatgrass juice?

L-Arginine drug i.e., Aggrenox has been shown by Doctors, to reduce strokes and/or TIAs by almost 20%

Anyone? Please post.

Thanks

Disability living allowance (DLA)

sammonds — Sun, 15 Nov 2009 16:01:27 GMT

Hello to every body,

I wanted to know if any one from England has had luck applying for DLA.
I am 37 years old, I had one mild stroke in Jan 09 and then a bad one in Feb 09

Steve diagnosed 2005

Positive for CADASIL & MELAS - Has anyone been tested for MELAS?

xoccerlvr — Sun, 15 Nov 2009 05:36:33 GMT

Have you been tested for MELAS? I have a family with positive CADASIL & positive MELAS. Since genetic testing is relatively expensive, I wonder if there are others out there that are positive for MELAS in addition to CADASIL, but have never gotten tested for MELAS because the docs attribute the symptoms to the positive CADASIL result & stop looking for other complications.

Hello

alitap0408 — Tue, 03 Nov 2009 21:34:06 GMT

This is my first posting though I have visited the site numerous times. I am twenty four years old and have been diagnosed with Cadasil official for a few months, unofficially for about three years. My sister (19) has also been diagnosed. Both of us through blood testing and MRI.

I have finally gotten past the shock of the diagnosis and am now on a mission to learn whatever I can about it. It is startling to me how little research has been done. I am wondering what others have done in regards to supplements. I have been prescribed an aspirin a day and a extremely low-fat, low cholesterol diet. I think there must be more that I can be doing to stave off the slow decline. Thanks so much for the help. I look forward to speaking with all of you.

NOV 2009 - AVON FUNDRAISER FOR CADASIL TOGETHER WE HAVE HOPE

Byds — Fri, 30 Oct 2009 14:07:18 GMT

Jasmin has volunteered to do a fundraiser for the foundation. Way to Go!

Deadline: November 6th, 2009

She is conducting a fundraiser through AVON to raise money for the Together We Have Hope organization. Here is a link to the event website, She would really appreciate it if you would take a look and spread the word, maybe even buy something.

http://jfling.avonrepresentative.com/online_event/view.php?rep_spnsr_evnt_id=13671 or

http://jfling.avonrepresentative.com/online_event/view.php?rep_spnsr_evnt_id=13671

She wants to donate all the proceeds. She thought it would be a good company to go through, since they offer direct shipping, so people all over the nation can take part. I am not sure about Canada and beyond, sorry! They also have a variety of products, something for everybody, lots of gift ideas for the upcoming holidays.
Make sure to enter the code "CADASIL" at check out, that's how they record the progress. If you are interested, I can send you the special email they made up for me to send to people, which also has the direct link. flingfloh@aol.com
Thank you so much for your support!
Have a wonderful day!

Jasmin

need your experitse

moli2119 — Tue, 20 Oct 2009 13:07:35 GMT

I have not been on line for a while. (had a rough year)
I am having problems with my tongue pushing my teeth (unknowingly).
It is getting lopsided to the left. I also wake up in pain from biting my tongue.
My jaw hurts from biting hard without noticing it.
This happens with or without headaches.
Has anyone experience anything like this?
God bless you all and thanks for helping everyone stay TOGETHER during this difficult time.
Maria (57)

need your expertise on symptoms

moli2119 — Tue, 20 Oct 2009 01:07:37 GMT

Hi everyone,
I have been gone for a while. (had a rough time). I am doing better with the headaches however I am pushing my teeth with my tongue (unknowingly) and my bite has changed significantly. I am in pain from what appears to be biting hard.
I am concerned that the left side of my mouth is becoming lopsided. At times I wake up from the pain of biting my tongue.

Is anyone having problems with their mouth, teeth, jaw, etc?
God bless and thanks.
Maria

Headache Question

jessica — Mon, 05 Oct 2009 15:37:49 GMT

When you all have headaches are they generally one sided?

test

real — Tue, 29 Sep 2009 02:27:09 GMT

KB 2796 (lomerizine)

real — Sun, 27 Sep 2009 02:56:24 GMT

Anyone know of this drug?
REAL

KB 2796 (lomerizine)

real — Sun, 27 Sep 2009 02:48:15 GMT

Any one hear anything about this drug? Claims our that it works for CADASIL patients.
Real

hello

jessica — Mon, 21 Sep 2009 13:57:14 GMT

Hello Everyone,
I'm new to this forum. I just wanted to start off by saying that I haven't been diagnosed with cadasil, but my doctor is leaning toward it at this time. It all started in Dec. of 2008 when my husband and I layed down to take a nap and I woke him by having a violent seizure which landed me in the hospital over night. The EEG showed a lesion so I was scheduled to see a neurologist (because the small hospital I was in doesn't have one) and sent home the next day. When I went to my Dr. appt he sent me to have an MRI and he from the get go always seemed real confused about what he was seeing but he would never tell me anything other than what test we were gonna run and that he had it in my charts as white matter disease. Eventually after all the "basic" testing was done, I asked him just exactly what does it look like and he said basiclly it looks like you've had a bunch of little mini-strokes (TIA'S) all over with no known cause. I have had several other things ruled out including: multiple sclerosis, rheumatoid arthritis, lyme disease, and lupus. I said well what now and that is when he suggested we test for cadasil. I have noticed some changes in myself mostly just small things such as I used to be able to spell just about anything people used to asked me to spell for them now i find myself asking them. I do have headaches but I don't know if you would consider them migraines. I'm very forgetful. I was working in the ICU as a nurse before all of this but with the laws against driving and siezures and no public transportation where i live i had to quit. As far as I know there hasn't been anyone in my family diagnosed with this. I'm scared and don't know what to do. I have three young children all boys by the way to worry about too. I've got the orders for the blood test and athena is who my doctor sent them to but without insurance it may take a while to get it paid for. Please let me hear from you all sorry my first post was so long ill make it shorter next time.

NEW DIAGNOSIS

HOPE — Mon, 07 Sep 2009 01:58:57 GMT

I just found this site following an appointment with my geneticist. I was diagnosed in May following an non symptomatic stroke in April 08. Since then my father, brother and a cousin have received positive a diagnosis. I hope that we can find information to give to our physicians since none of them are familiar with this condition.

Should I get tested?

Anja — Thur, 27 Aug 2009 14:10:14 GMT

My family history looks like CADASIL ran on my paternal grandfather's side, but my father died (with all the symptoms) just before CADASIL was discovered. I always knew that I took after Dad and his sister. I had migraines when I was younger. Then, in my early forties, I started having little dizzy spells, and strange problems with memory and disorientation.

When I first learned about CADASIL, I asked my doctor to have me tested for it. He had never heard of it, but he sent me for an MRI, which showed I had a pattern of lacunar strokes. My cholesterol was normal, and my blood pressure was very low (a symptom of the disease in our family). Then the doctor put me on a massive dose of statin, plus aspirin and B-vitamins. He told me not to take NSAIDS, even though I need them for arthritis.

That was two years ago, and he still won't give me a referal for the DNA test. I brought him articles about CADASIL, but I don't think he read them. He said if I have something like that, I'm better off not knowing about it, and a positive test would make it hard for me to get employment or insurance. He said not to tell my boss about the strokes, or I'll be fired.

I'm still about three years away from being able to afford to retire. My father and his sister were both forced to retire younger that me because of mental confusion, but the economy was different then.

I'm very independent at work, but people have started asking me if I'm taking medications that affect my mind, and why I work so slowly, and why I'm always late (I can get lost on the way to work). I don't know what to tell them.

I thought if I could have the DNA test, I would have something to tell my boss if I get into too much trouble, and if I need to apply for disability. My doctor said, "Don't even consider disability. It's not that easy. Just keep working until you're 65!" If I follow his advice, I feel like I'm being dishonest with my employer, and setting myself up for some major humiliation in the near future.

Is this doctor right, or should I find a doctor who will have me tested?

6 months since diagnosis

bsundara — Sat, 22 Aug 2009 22:20:32 GMT

Hello folks ,

I rarely come to this forum,
I wanted to pen down and keep everyone posted about my condition. I was diagnosed with cadasil in march 2009.

Its been exactly 6 months and i report to say that I am doing perfectly fine
- cross my fingers, and pray to the Almighty.

- I have had a few headaches, and was told by a neurologist that it is due to recovering from stroke and supposedly not related to cadasil
- I am sleeping well
- My exercising is continuing regularly, I am into aerobics, biking and weights.
I bike around 30 miles a week.
- diet is normal
- I am back at work full time for the past 3 months.
- my alertness and sharpness and mental agility is fine.

- Pranayam and Yoga is continuing without stoppage. After pranayam, I feel very relaxed and zero stress.

SO so far so good. Whenever condition worsens it is inevitable and I will take it as it comes, My view is that one has to die any day, this is the final thing that is written for all of us. SO while I am alive, I do not want to think about the bad things and want to keep my thoughts positive.

That said, does any one take
- gingko Biloba?
- Fish oil capsules?
- any one use turmeric either in cooking or eating it raw?

I want to find out, if people are into alternate treatments - Ayurveda etc.

Thanks