NF2 Cure ?

[tony]

Sorry no cure as such - just a strange insight
I was with the NF2 specialist and we were discussing
which type I was - (for the rest - its a bit of a class thing...)
Anyhow I said I thought I was a Mosaic of some kind
- due to the irregular and slow growth patterns
But the specialist said - no, you have lost SOME
of your "Tumour suppressor function" - but not all
This has put me in spin - I understood it was gone
completely - not merely mis-firing
My thinking here is surely if something is working,
but below safe limits - surely, medically, you can do
something to assist it ?
Just a thought
Best Regards
Tony

[NF-2er]

Hi Tony;

   Seems if one never produced protein merlin, the risk of developing tumors any time and any where would really be heightened.
   There's no Tx that I'm aware of. It seems staying in good physical health, eating a good diet, and geting plenty of rest with some exercize would be somewhat helpful helping the body achieve homeostasis.
   I've Peripheral Neuropathy, secondary to NF-2, and am always awaiting discovery of a new tumor. NF-2 mediated Neuropathy is due to a proliferation of free floating schwann cells filling the normal nerve's axonal receptors in the feet especially.
   Axonal Peripheral Neuropathy only affects 3% of NF-2ers according to Mayo Neurology. It is usually related to diabetes somewhat differently but I understand Neuropathy can stand alone as a primary condition of unknown etiology.

   NF-2er

[NF-2er]

Hi;

   Just to share another reading of an experiment.

   It was discovered that an AN developed in a mouse could be reduced to half it's size by the injection of... I forgot what. The tumor did regrow but not to the same dimension.

   Russ

[Windsong]

... so would this mean if an Aner who has one An ( i.e.  not nf2) and also has neuropathy especially in the feet etc. which has no other known cause should maybe be asking for some kind of test to find out why???  is there some test I don't know about for merlin? what are you saying here? thank you ....

Hi Tony;

   Seems if one never produced protein merlin, the risk of developing tumors any time and any where would really be heightened.
   There's no Tx that I'm aware of. It seems staying in good physical health, eating a good diet, and geting plenty of rest with some exercize would be somewhat helpful helping the body achieve homeostasis.
   I've Peripheral Neuropathy, secondary to NF-2, and am always awaiting discovery of a new tumor. NF-2 mediated Neuropathy is due to a proliferation of free floating schwann cells filling the normal nerve's axonal receptors in the feet especially.
   Axonal Peripheral Neuropathy only affects 3% of NF-2ers according to Mayo Neurology. It is usually related to diabetes somewhat differently but I understand Neuropathy can stand alone as a primary condition of unknown etiology.

   NF-2er