Does ANYBODY know of somebody with the Neurological condition SCHWANNOMATOSIS or NF3? NOT NF1 or NF2!

[Adlon57]

I have had this neurological condition since 1970, when I had a small schwannoma removed on my left forearm. Since then I have had three surgical removals of them, I have an impending operation a biopsy next Monday. I have my own personal specialist [a good friend] but have NEVER met or been in contact with anybody else with the same condition. I would like to get in contact, or hear from even PM if a bit wary? I live in Northern Ireland, the only person on the island with the condition! My details are known in Guys Hospital London. First recognised as a medical condition in 1973, ironically I go back to 1970. I have limited time as diagnosed with terminal epilepsy Juvenile Myoclonic Epilepsy which again started in 1970, having had over 400 seizures in that time, a recent MRI came to that conclusion! Since I have never actually met anybody with the condition, and what has been noted, I have had other symptoms not previously noted in the 'accepted versions', it would be such a pity that my relevant symptoms could be lost, no offence to my excellent specialist, who actually diagnosed me in 2017, but she is limited herself. So anybody out there?

[hunter5582]

FYI - I just attended the Children's Tumor Foundation NF Conference in Philadelphia. (Not all about children). Schwannomatosis was the focus of a number of the presentations. There is action happening in this arena. One very interesting presentation was about a phone app for pain.

[Adlon57 in reply to hunter5582]

Interesting? 👍