what to do

cindrella

Hi i had genetic testing done as i have a swelling on my head and headache for last three years. Headache and swelling came and never left seeing neurologist had various tests done still no answer.

Had appointment for dermatology the other day and he asked me how things were going with neurologist i said i was waiting on genetic results and that i will have to have more lumbar punctures. He then looks at my file and said i see from genetic results u have Newman's pik type c and that's all he said. So i googled it and prognosis isn't great cant believe it was just said and nothing not seeing neurologist till march what should i do anyone ever here of this disorder ,,?

Pretzill

cindrella wrote: »

Hi i had genetic testing done as i have a swelling on my head and headache for last three years. Headache and swelling came and never left seeing neurologist had various tests done still no answer.

Had appointment for dermatology the other day and he asked me how things were going with neurologist i said i was waiting on genetic results and that i will have to have more lumbar punctures. He then looks at my file and said i see from genetic results u have Newman's pik type c and that's all he said. So i googled it and prognosis isn't great cant believe it was just said and nothing not seeing neurologist till march what should i do anyone ever here of this disorder ,,?

I think more than a blood test would need to be done to confirn this - and I can't understand how a medical professional would tell you had any disorder without offering explanations.

My advice would be to contact your gp and tell them they should be passed any notes from your consultant and if not they may be able to contact them to put your mind at rest.

And also it's very easy to be alarmed by cases online - get proper answers from the docs and do not be afraid to contact the neuriologists secretary.

Patty O Furniture

There should have been someone like the neurologist secretary to follow up with advice especially after seeing the specialist or there should be a no on the appointment card, i should know from visits myself.