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!

Written by

Adlon57
To view profiles and participate in discussions please or .
Read more about...
2 Replies
•
Not what you're looking for?
You may also like...
A rough list of what foods to eat or not with Diabetes 2?
I'm wanting to know what foods not to eat when I have Diabetes 2, should I stay off ?? should I eat...
Dementia! Who really cares?
I was diagnosed with dementia in 2017. Now it has got to the stage invited by relatives for a...
Stop my hands shaking, I cannot type with two hands, last straw reaction to AZ vaccine, left hand useless, since feb. 2021, getting better?
I have absolutely no confidence, hands all over the place, especially left, high blood pressure,...
I'm new here, possibility of cancer & how to make my gp take me seriously?
Hi, 18 year old girl here,
For the last eight months I've had intense pain in the lower right hand...
Is there any way of saying "Enough", I do not want to receive anymore medical care or medications, they are doing me more harm than good!
The medication I am receiving is causing me more pain than anything else! It is getting worse, more...