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?
Does ANYBODY know of somebody with the Ne... - Healthy Evidence
Does ANYBODY know of somebody with the Neurological condition SCHWANNOMATOSIS or NF3? NOT NF1 or NF2!
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Adlon57
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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.
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