ANA Discussion Forum

Watch and Wait => For those in the 'watch and wait' status => Topic started by: Lou on June 28, 2012, 06:45:25 am

Title: neurologist or not
Post by: Lou on June 28, 2012, 06:45:25 am

Hi all
so I have had my rant topic, made my appointment with my GP, next question for you wise ones is, who exactly should I have or had appointments with.... I have only ever seen an ENT
thanks
Lou x

Title: Re: neurologist or not
Post by: Cheryl R on June 28, 2012, 07:47:08 am

Lou, I just did some googling of NF2 institutes in the UK.     Sorry I do not paste and copy well.     Look up www.advocurenf2.org      Under resources which is across the top,click on and list shows  NF clinical centers as part of the new list.   It gives the ones in the UK about mid way down.         I hope this helps and you can the specialist you need.                                Cheryl R

Title: Re: neurologist or not
Post by: Lou on June 28, 2012, 08:14:50 am

Cheryl, how can I thank you!
I have already emailed the one at the JR, can you believe I live in Oxford and never knew this existed at the John Radcliffe
I will keep you posted. I see a light

thank you again

Lou x

Title: Re: neurologist or not
Post by: Cheryl R on June 28, 2012, 08:43:36 am

That is great!       I only knew that there was some places over there due to a NF2 lady I knew who had talked to a family of a teenager with NF2 and he was being seen somewhere there but I did not know where now.      I hope they can be of good help as know too well how scary it is to have NF2 and facial neuroma both!                            Cheryl R

Title: Re: neurologist or not
Post by: Lou on June 28, 2012, 11:04:40 am

Cheryl, I have been to my GP and she has given me the  go ahead to make an appointment with a neurologist. Wahooooo. I also have had an email from the nf2 nurse who told me to go back to the GP  and ask die a referral to her. Thank you spoon much. Your Google search has already potentially changed the course of my life
If I could you would be getting a great big hug, ((((((((xxxxx))))))))
Lou

Title: Re: neurologist or not
Post by: Cheryl R on June 28, 2012, 04:45:01 pm

Thank you Lou and and I am happy to hear that you will be going to a place that knows more about NF2.    Thank you for the hug and a big one back to you!      Now if we just had a magic hug to rid those who have NF2 and AN's too.           Keep it posted on how it goes for you and we hope for the best!                                                                   Cheryl R                                                                       

Title: Re: neurologist or not
Post by: It is what it is on June 28, 2012, 06:13:37 pm

This was a fun set of postings to read!  It's amazing to witness the helpful, life changing information that is shared on an online resource like this.  I am grateful to have the opportunity to begin to know so many caring and kind people.   ;D

Karen

Title: Re: neurologist or not
Post by: MDemisay on June 29, 2012, 11:52:42 am

Everyone and especially Lou,


I am so glad when this happens, it is the influence of the working together and HIS HANDS isn't it wonderful and refreshing! It's amazing! Thank you Cheryl! May you at last be on the path to treatment, remember to follow your gut!

Mike