Neuro appiontment

hi all

just letting you know how appointment went today.

well the NL was very good asked alot of questions, and did exams, i liked her, questioned everything,

she doesnt understand why surgeryical appointment was put back, for the arachnoid cyst,

unsure wether i have MS, wanted to do LP, so i questioned if it was a good idea due to chiari,

she recommended that we get the fluid when i go for surgery, then do testing on it,

she then asked wether there was any family history of any neuro stuff, told her grandfather had motornuron diease, and my mother told me she had funny things like me, plus now brother doing odd things,

she spoke about visual and audio brain testing, cant remember what that is,

ok this is where it gets interesting,

she thinks i might hav a condition call CADISIL (Cerebral Autosomal Dominant Arteriopathy With Subcortical Infarcts and Leukoencephalopathy)

Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy, usually called CADASIL, is an inherited condition that causes stroke and other impairments. This condition affects blood flow in small blood vessels, particularly in the brain. An abnormality in the muscle cells surrounding these blood vessels (vascular smooth muscle cells) gradually destroys these cells. The resulting blood vessel damage can cause migraines and other impairments of normal brain function. Later in life, the damaged blood vessels can cause reduced blood flow to various tissues in the body (ischemia). Although the severity of symptoms varies among those affected, people with CADASIL typically have more than one stroke in their lifetime. Recurrent strokes can progressively damage the brain, causing loss of intellectual function (dementia).

i had bloods done today, and wont know for while they had to be flown over seas for testing.

if these bloods come back normal then we will go down the MS road, but doing research it fits with the white matter on the brain, its in the exact same places,

also she doesnt think chiari is causing my problems, and if they are only headaches,

im overwelmed by this, im unsure wether i want this dianosis, or any at that fact, this is scarey, i prepaired myself for MS, and now ive been thrown a curveball,

if im possitive my whole family has to be tested, including children,

there is no treatment, only asprin to hopfully stop a big stroke,

on the other hand im excited that i have a dianosis finally, and i dont have to wonder anymore.


Dear Joelene:

It sounds like the doctor is certainly on top of things..which is great. I am sorry for all this new info being thrown at has to be totally overwhelming....

We are here for you...pls keep us updated.




It sounds like she still wants you to have the surgery for the cyst though right? I am so glad you asked all those questions. She sounds like an excellent doctor which is a true blessing. I know it is scarey but hopefully she can help you feel better. Will she do your surgery? Please keep us posted. We all love you and you are in my prayers.



i am still having surgery see the surgeon on the 17 june,

i will know in too months weather its that diease. its a progressive illness, there is no treatment, they only thing is asprin to hopfully reduce strokes,

its a scarey thought to think that im a ticking time bomb, most people dont have symptoms until in the 30 40 50, i started at 16,

she was a good doctor, we will see how it goes, if this comes back negative, then MS will be looked at again,

even though the symptoms and brain damage fit with cadasil,

i have the grueling task of talking to my mother about her problems, to see if there is a pattern,

thankyou to all concerned,

im abit numb emotionally today about this, there are still things that dont add up, so i will do more research,


Hi Joelene:

I just wanted to tell you that you are in my thoughts and prayers. June 17th can't come quick enough for you, I am sure..that waiting game stinks!!!!




I will be praying for a positive outcome from your surgeon appt on June 17th. Please let us know right away how it turns out. As far as the Cadasil, I am hoping that you do not have that. I know this news is overwhelming. I will be praying for the best possible answer for you. I am praying that you do not have MS either. It is so difficult to have these serious illnesses and be able to keep going with our normal lives. Do you also have Chiari?

Praying for you my friend,


hi carla

im hoping also, that i dont have cadasil, i came to term for maybe having MS, atleast that gave me answers.

i had being unwell, and seem to have more bad days then good,

i do have chiari aswell, but told this a not causing my problems as the descend of cellebum tounsils is too little, and also have good fliud flow,

im aware that you can have a type 0 chiari and end up with symptoms.

everything is so up on the air, i dont know wether im going forward or backwards,

thanks for you guys support,


Jolene - I hope you get some answers soon; I know how frustrating it is to know something is wrong and not get a diagnosis. Especially, since nothing can be treated and fixed until it's diagnosed. I'm hoping for all good news for you.




I know things are very frustrating for you right now. I don't know how they can not be. Especially when you are having more bad days than good. How is your family and your husband taking this possible diagnosis? When will you have test results? I am praying for you, Jolene. Please keep us all posted.