Ok, here's my story (as truncated as possible). I ...
...was diagnosed 10/01
...have been on all 4 injectibles and one dose of Tysabri - when it was called Antegren (and even on
those drugs, I was relapsing 3-4 times/year)
...started the Best Bet/MS Recovery Diet February 2009
...just finished my last dose of Novantrone in April (and have been relapse free since my first dose
in the summer of 2006)
...started Ampyra in May
...was treated for CCSVI twice this summer (6/18 and 9/14) with positive results
...have been doing well in Physical Therapy since July
I had a follow up appointment with my neurologist this past Monday. He was surprisingly receptive
to CCSVI but still wants to talk about drug treatment options. Prior to Novantrone, MS was an
aggressive little bugger. I was using a cane within a year of my diagnosis
and have used a walker,
hand controls to drive and a scooter or wheelchair for longer distances.
I had an MRI in August that showed no new lesions on my brain or my spine.
So, he gave me some info on Gilenya and said we could also try off-label drugs (like Methotrexate).
I'll see him in January again to decide.
I'm feeling really good right now and I'm sooooooo scared I will relapse and get worse. Non-ms
wise I'm the healthiest I've ever been -eating well, healthy weight/cholesterol/blood sugar/blood
pressure. A DMD would be a safety net- to an extent. I'm at a loss right now. I know that CCSVI is
supposed to stop progression. But I feel myself sinking into a worry spiral. Advice, please?