new diagnosis chairi malformation

Had appt with neuro on Tuesday. He was baffled with some of my symptoms. I take episodes where i loose all coordination and speech almost like i have had a stroke. These episodes usually last 3 hrs. He has always said that this isnt down to ms. They have becoming more frequent. I have had 9 episodes in past 6 weeks. Even ended up in hospital last week. Told relapse and was put on steroids. So after meeting with him he went back consulted with his collegues had another look at mri’s. He has just phoned this afternoon. Told me i have chairi malformation which i have had all my life. This would make sense as i have been having these episodes for 30 yrs. Even tho just diagnosed with ms 5 yrs ago. I dont know what to make off the recent diagnosis. Im happy to have answers at last. But on other hand only treatment is surgery and as its on brain comes with risks. And it is not life threatening as probably had since birth. Bur episodes are becoming more frequent and are disabling and terrifying when they happen. So i am now waiting to go see neuro surgeon

hi violet

does this mean that you don’t have ms?

if so look at the bright side, you don’t have an incurable illness!

if you DO have ms, have a good talk with your surgeon and see if he can reassure you.

good luck

carole xx

No i still have ms. I have 3 lesions. But told today they are minor lesions. I wont know more until i meet with neuro surgeon x

good luck then violet

sending love and good thoughts your way

carole x

Thanks carole xx

Good Luck Violet

Love Annex

I will be thinking of you Violet.

Hope you get a definite diagnosis soon and hopefully this will bring help and correct meds.

Take care.

Shazzie xx