Neurofibromatosis Type 2 Anyone? - Neurofibromatosis Message Board

HERMIT · 07-08-2003, 07:51 PM

Just wanted to ask how you are dealing with it and such. I am rapisly losing my hearing----sounds like a dog barking all the time while being beamed up in the old Star Treck movies---drivin me nuts.

zuzu8 · 07-13-2003, 01:34 PM

Hi Hermit- I'm so sorry to hear you are dealing with this rare disorder. I'm sure you've researched it a lot, but here's a link about it (from many different resources including the NIH (National Institutes of Health), National Library of Medicine, Mayo Clinic etc.) that might prove useful.

Have you considered entering any clinical trials? The NIH is recruiting all the time for this disease.
[url="http://search.nlm.nih.gov/medlineplus/query?FUNCTION=search&PARAMETER=neurofib romatosis+type+2&DISAMBIGUATION=true&SER VER1=server1&SERVER2=server2&START=0&END =25&MAX=500&ASPECT=0"]http://search.nlm.nih.gov/medlineplus/query?FUNCTION=search&PARAMETER=neurofib romatosis+type+2&DISAMBIGUATION=true&SER VER1=server1&SERVER2=server2&START=0&END =25&MAX=500&ASPECT=0[/url]

Good luck,

zuzu