I have Schwannomatosis or NF3, I am terminally ill, irreparable brain damage from double seizure plus other complications. I could be dead by tomorrow, I am too fatigued to carry on my plea for information on the subject, too much of a brick wall from supposed experts on the subject, I have TRIED numerous places ALL over the world via post or internet, to get interest on my symptoms over the years, tried to bring in new angles and offer new information from my own personal experience. I had the condition symptoms from 1970, myself finally officially diagnosed in March 2017. I have had surgery three times. I have my own specialist since 2021. Hugs and kisses do not help my plea for recognition and interest, noted in numerous hospitals and medical authorities. My only friend on the HU site has been Hunter over the years. I have NEVER actually met ANYBODY with the same condition, now too late, the Medical World has had it's chance, this is my final word on the subject. So called experts ignoring my questions about it, I have to listen to their bland remarks on the subject 'I AM ALWAYS WRONG!' Getting used to it now as they go off on their bland irrelevant diagnosis! Sitting there like a fish in a bowl. They are always right, bad boy for even thinking I was right.
Ironic I am getting the same reaction with my book, for 14 years I have been writing a book on two infamous Irish 19th century serial killers, it has reached 50,000 words, 150 pages, all acknowledged, and indexed, but because it is against the "accepted" version, it is wrong, cannot be accepted, now being a world expert on the subject does not help, refused by all publishers, cost too much to get published myself, it will probably never be published? Like my information on Schwannomatosis LOST!