[janey1]

Hi to all. I am posting from England (don't know if there are many of us here). My son aged 18 has been ill for 2 years now with supposedly hemiplegic migraine. This was diagnosed following a severe onset headache with stroke like features. However 2 years on he is still unwell, with daily excrutiating headaches on rising and moving, fluid leaking from his ear, balance & visual problems and ongoing left sided weakness. His neurologist gives him 3 monthly steroid injections which gives him some sort of qualify of life. We are at the point now where we need answers. He also has a connective tissue disorder called Ehlers-Danlos Syndrome.
Feel free to point us in the right direction for a diagnosis.
Many thanks
Janey x

[Rrae]

Welcome to NT! This is a fantastic place to be. Indeed there are many others from England and several other countries - it's just wonderful how we are able to connect with one another, as if there were no geographical boundaries.

I'm so very sorry about your son and what this must be doing to you I wish I were able to be of better help, but I'm not familiar with these conditions. I'm sure there are others here who can lend a hand. Sometimes I find it helpful to use the little 'search' feature toward the top of the page to type in a word(s) and it'll automatically bring up other posts of a similar nature.

There are a lot of people who care and the support here is endless. It's great to have you and I hope you can begin to get some answers soon....

Caring,
Rae

[MelodyL]

Originally Posted by janey1

Hi to all. I am posting from England (don't know if there are many of us here). My son aged 18 has been ill for 2 years now with supposedly hemiplegic migraine. This was diagnosed following a severe onset headache with stroke like features. However 2 years on he is still unwell, with daily excrutiating headaches on rising and moving, fluid leaking from his ear, balance & visual problems and ongoing left sided weakness. His neurologist gives him 3 monthly steroid injections which gives him some sort of qualify of life. We are at the point now where we need answers. He also has a connective tissue disorder called Ehlers-Danlos Syndrome.
Feel free to point us in the right direction for a diagnosis.
Many thanks
Janey x

Hi Janey:

I am so sorry to hear what your family has been through. I'm sure you are a very loving mother and I'm sure your son appreciates you. Hoping others will come along and direct you to a proper forum.

Thinking warm thoughts for you and your family.

Take care and Welcome to Neurotalk

Melody

[(Broken Wings)]

Hi,

Welcome to NT

So sorry you and your family have these problems to deal with.

There's lots of info here. I know you'll find something here that helps.

You're not alone. So, look around and make yourself at home.

[Darlene]

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here, just let us know how we can assist, you will see we are are supportive and relaxing place. Our shoulders are here for support in many ways.

Look's like you are roaming around.Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene