New here, hello
 

Hi,

My name is Gillian and I have a 1 year old daughter born with hydrocephalus. We live in Ireland and was just searching the web to find discussion threads for people with hydrocephalus and came across this one and like the format:)

Orlaith (my daughter) was diagnosed with hydrocephalus when I was 36 weeks pregnant. They sectioned me at 38 weeks and when she was three weeks old she had her vp shunt inserted. It will be one year on tuesday since the op and so far so good:):):)

anyway enough rambling, just thought i would introduce us and the rest of the clan who consists of my husband jason, son ciaran (14) and dd1 Aoife (11) we are all in the dark as to what to expect from orlaith as in she is only 1 so cant tell us if she's in pain etc, well apart from screaming the house down which she doesnt normally do :)

Welcome to NeuroTalk Gillian..I see you've found our hydrocephalus forum.

http://neurotalk.psychcentral.com/forumdisplay.php?f=14

I'm glad you found us.

Gillian,

Hello and welcome to NeuroTalk. Nice to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can. Again welcome, looking forward to seeing you around.

A BIG :hug: for Orlaith.

Darlene:hug:

Thanks for the lovely welcome:)

Hi Gillian. I'm also glad you found us. This is a wonderful, caring and supportive community. I adore the names of your children!

:hug:

Hi, New & Old
 

I guess I registered over a year ago, but I don't know that I ever said hi or posted. I can't tell. I don't remember being here, but when I went to register tonight I found out I was already here. Part of my life I guess. I apologize for the length of this.

I have a very long list of disorders and diagnoses. I have 14 specialists. I have several neuro-specialists. I will be going through my second series of complete MRIs and EEGs within 6 months because of the seriousness of the problems I am having. I normally have to have brain MRIs one a year - this year I have had full body MRIs already and repeating. Also, they are ordering a lot of blood tests that day also.

I have one neuro-specialist who has spent many nights going over my medical records on her own time to find a missing link. She has considered me as a possible Behcet's candidate; in any case, she believes I have a genetic neurological disorder that predominately affects the females in my family that hasn't been found yet. Heck, maybe the disease hasn't been found yet. My grandmother, mother had similar issues, and a sister is having some problems now.

I have a family doctor and another neurologist who both are frustrated with the whole situation and the way other doctors treat me. A lot of doctors don't want to deal with me because of the complexity, or they don't know my background so pass me off. Since I also have fibromyalgia, some doctors want to label everything fibromyalgia. I also have Fuch's Dystrophy which affects the corneas, so my eyesight in both eyes has been affected and may some day need transplants.

3 balance disorders
fibromyalgia
endolymphatic hydrops
Fuch's Dystrophy
Uveitis/Iritis
Blepharitis - repeat
arthritis
degenerative disk disease
TIA history
venous angiomas
Trigeminal Neuralgia
Body Control issues - neuro
monoclonic jerks
essential tremors
migraines and cluster headaches
numbness throughout body esp. left leg
lots of sores all the time
sleep apnea
asthma
depression disorder - surprise; it wasn't a problem until the health problems came up

more - seems like every time I go to the specialists, I get more diagnoses etc.

Lynda

Lynda,

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

Hope the doctors can come up with some solutions soon.

Again welcome, looking forward to seeing you around.

Darlene:hug:

Hi (((Lynda))). Welcome to NeuroTalk (again). :) Don't worry. I think a LOT of us here are lucky to remember anything that happens to us!

I wonder if that neuro is on the money. I just read up on symptoms of Behcet's and it sounds as if you have several of the primary symptoms.

I'm amazed at the number of people I see come through here with autoimmune disorders. Really makes me wonder.

I have fibro and chronic myofascia as well and several spine problems and those alone knock me for a loop, so you have my complete sympathy.

Of course, we aren't doctors here. I'm finding some meditation tapes that were given to me by my massage therapist at least help me relax. I listen to them every night when I'm going to sleep. :o

Wish I could make your problems go away.

You'll find this place to be a very caring and supportive community, so I'm very glad you found us. :hug: