Re: questionnaire

[Guest guest]

Thanks for responding. Regretfully yours' was a common story. So many people complained of symptoms for so many years prior to diagnosis. The MRI has however changed much of that and represents probably the biggest single advance in NF2. We still do however hear of far too many people spending far too long prior to diagnosis but less so that it was. I will be asking about symptoms prior to diagnosis. Any other suggestions?

Re: questionnaire

Thanks for the compliment. Questionnaire is in process of being developed. Any questions you'd like to see asked? Still finding new people and telling them about it and encouraging them to reply when received. Must tell you some people are very skeptical and I understand that. Many have never heard of me and are not used to such direct approaches. I will count you in.

[Guest guest]

Thanks for responding. Regretfully yours' was a common story. So many people complained of symptoms for so many years prior to diagnosis. The MRI has however changed much of that and represents probably the biggest single advance in NF2. We still do however hear of far too many people spending far too long prior to diagnosis but less so that it was. I will be asking about symptoms prior to diagnosis. Any other suggestions?

Re: questionnaire

Thanks for the compliment. Questionnaire is in process of being developed. Any questions you'd like to see asked? Still finding new people and telling them about it and encouraging them to reply when received. Must tell you some people are very skeptical and I understand that. Many have never heard of me and are not used to such direct approaches. I will count you in.

[Guest guest]

Thanks for responding. Regretfully yours' was a common story. So many people complained of symptoms for so many years prior to diagnosis. The MRI has however changed much of that and represents probably the biggest single advance in NF2. We still do however hear of far too many people spending far too long prior to diagnosis but less so that it was. I will be asking about symptoms prior to diagnosis. Any other suggestions?

Re: questionnaire

Thanks for the compliment. Questionnaire is in process of being developed. Any questions you'd like to see asked? Still finding new people and telling them about it and encouraging them to reply when received. Must tell you some people are very skeptical and I understand that. Many have never heard of me and are not used to such direct approaches. I will count you in.

[Guest guest]

I will be asking about symptoms prior to diagnosis.

Oh good, Jon! I had none. I picked up the telephone one day and heard nothing on one side (I was 19). I sure hope that you're planning to print the results here, on the Crew. I am very curious how others realized that they had a problem.

Thanks for getting the ball rolling....June )

[Guest guest]

I will be asking about symptoms prior to diagnosis.

Oh good, Jon! I had none. I picked up the telephone one day and heard nothing on one side (I was 19). I sure hope that you're planning to print the results here, on the Crew. I am very curious how others realized that they had a problem.

Thanks for getting the ball rolling....June )

[Guest guest]

I will be asking about symptoms prior to diagnosis.

Oh good, Jon! I had none. I picked up the telephone one day and heard nothing on one side (I was 19). I sure hope that you're planning to print the results here, on the Crew. I am very curious how others realized that they had a problem.

Thanks for getting the ball rolling....June )

[Guest guest]

Chain of events and doctors that led to the doctor diagnosing the actual NF2. For me, I wasn't informed until 26 years later after my initial onset of double vision. The doctors seems rather lost as to why I was having brain tumors. I was a very perplexing case at the time. I will qoute you that on your survey from my records I managed to copy.

Jane - I was 31 when I was diagnosed with the multiple meningiomas (hearing loss led to a CT) - Diagnosed positively with NF2 at age 44.

I'm very anxious to see what Jon's survey will uncover for all of us!

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