by
JaniceB » Thu Sep 13, 2012 7:06 am
My hair has got thicker and curlier since being on betaferon and then Gilenya. I could do with it thinning a bit. It is so thick I have to go have it thinned at the hairdressers. So I am no help. Sorry to hear about those losing hair. Obviously we don't all get the same side effects. But the thing that has bothered me on Gilenya is the lowered immunity and hence lots of colds.
Got an appointment to see my neuro in a couple of weeks, am I brave enough to tell him I would like to stop Gilenya and just rely on OMS? Maybe - I feel like I have improved so much since being fully OMS for the last year. ( The previous year I went gluten free and took the fish oil and Vitamin D, and reduced dairy and red meat, but did not fully follow the programme) I am very close to symptom-less, with just the tiniest numbness in one finger and thumb, and one big toe. This is from full right side tingling and numbness, loss of balance, loss of coordination in my right hand, l'hermittes, optic neuritis, and extreme fatigue at diagnosis two and half years ago.
Janice