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Latest post on 01 July 2012 - 12:59

Hi there just wanted to add my experience of living with this crazy illness for six years. It started with optic neuritis (undiagnosed) eight years ago but the numbing of my body is when I was diagnosed. I did not have the will power to follow the Swank regime. My neuro suggested a low fat diet while taking evening primrose, omegas and a multi vitamin. I also take Neurobion (vitamin b 2, 6 & 12) and also Phosphatidyl Serine (memory). I unfortunately had two major visual disturbances in less than two years. My neuro here suggested it was time to seriously look at dmd's and he wanted me to look at whether I would like to go for - Avonex, Rebif or Betaferon. I wanted Copaxone but it is not available here due to its country of origin. I had sleepless nights with trying to decide which one. On the day I had my appointment my doctor advised that they had checked whether I would be covered for Gilenya, the new oral drug (it is uber expensive) and the answer was yes. Decision was made, Gilenya it was. Have been taking it for eight months now and so far it is going well. I have never made any effort to join a support group. But thats just my way of dealing with this. My family and the limited friends who know about my illness give me loads of support when I need it. I do not want to be defined by this, so I have kept it very quiet - but thats again, just me. Usually I try to pretend I dont have it at all, despite my daily supplements and the dmd I take. Once the shock, tears and fear had subsided, I realised it may be a buggar but it was not the end and life had to go on. Wishing you positive thoughts and best of luck and health

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