OMG you just described my daughters skin.We're participating in the study also and I had never heard of this before.This was the one condition I had never heard of on her list so, when she said the name of it I asked what it was.I told her my daughter has this look to her skin, but we've never had a diagnosis.We never looked for a diagnosis,should we???? Her left side(the side most affected by her storkes) is always much colder than her right,sometimes her hand and foot turn very blue on the left side.How did you get a daignosis? , and what ahve they told you about this condition if you don't mind me asking.
mary Grace

    As far as I can remember kathleen's skin has always looked like this too.Mostly her arms and legs.When she's cold it's even more noticable.I'll be very curiouse to hear what your neurologist has to say about it.I have wondered if we need to have a diagnosis or if it's just a benign condition.I'de appreciate it if you let me know what you find out if you don't mind.
mary and kathleen

  Just posting so maybe if anyone missed it they might respond.I'm just very curious about this.Kathleen definatly ahs this look to her skin.The information is so sketchy about this I haven't decifered wether it worth seeking a diagnosis or not(I hate adding any tests or Dr. visits to our already long list) I have read that this has also occured in vessels of other organs,and the vessels of the brian  hhhhmmmmmm, and caused strokes.
Mary Grace

Hi Guys!  Sorry for the late response but I've been getting the run around until I finally got some real answers and can finally post.

So back to the original diagnosis when speaking with the Texas research group.  After answering some of their questions regarding moyamoya, they thought that I might have Livedo Reticularis and asked for photos.  After I sent the photos, they confirmed the diagnosis.

After speaking with another doctor, he thought it was ridiculous to react to a visual diagnosis and said that that LR could be diagnosed through a blood test or a skin graph. 

So, I made an appointment with a neurosurgeon and he told me that I needed to see a skin specialist.  He made an extra point that it was important to see a specialist rather than just the average dermatologist.  So that's what I did.

I just had my appointment yesterday and when he saw my skin, he visually diagnosed LR and said that a blood test was not necessary.  On a side note, I have a permanent purple marbled look on my left forearm but when I'm cold have the purple marbled look (mottling) all over my arms and legs.  On the permanent mottling, he was concerned for a more serious condition, Livedo Racemosa and said a skin biopsy was needed.  So the doctor removed a piece of my skin in the affected area.  I've been trying to do some online searches for livedo racemosa but the info seems contradictory depending on the website.  All I know from my doctor is that Racemosa is a vascular disease.  I'm now waiting on my results and will update as soon as I know more. 

I did ask the doctor what I could do for Livedo Riticularis but unfortunately, there's not much that can be done he said.  Since the livedo reticularis is tied to climate, I asked him if living in a warm climate will help and he said, absolutely.  That's because the cold weather is what brings out the mottling. 

I have made the decision to move from Germany to Los Angeles in a year.  I do not want the mottling to become permanent on more places on my body. 

I'm better at responding via email, so if anyone wants to talk in further detail, please don't hesitate to email me at: moeblair@yahoo.com

Regards,
Monica   

Hello,
    I believe I have LR as well.  My legs are always mottled.  My feet are always ice cold.  If I sit for longer than 20 minutes my feet turn dark purple.
    Before I was diagnosed with MM my Internist also told me I had something called Fibro-Muscular-Dysplasia.  I have stenosis in the vessels in and around my kidneys.  I was wondering if anyone else might have it?             Newt

Hey Monica,
     Thanks for writing back.  I was just wondering where you live in Germany?    Newt