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?
What to do now?
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gainsbourg
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It's pretty much just my legs - they're numb/tingly, weak, hyper-reflexive, spastic. Angioplasty for CCSVI has improved all of my other symptoms (and even the sympotms in my legs to a degree).
Since the summer of 2006 I've been using either a wheeled walker or two forearm crutches for short distances and a scooter or wheelchair for longer distances. I'm a 6.5 (self-assessed) on the EDSS - I need bi-lateral assistance to walk. I'm working on that in PT right now and I can walk abiout 180 feet with one forearm crutch which is great, but not enough to move me 1/2 notch down on the EDSS...
Since the summer of 2006 I've been using either a wheeled walker or two forearm crutches for short distances and a scooter or wheelchair for longer distances. I'm a 6.5 (self-assessed) on the EDSS - I need bi-lateral assistance to walk. I'm working on that in PT right now and I can walk abiout 180 feet with one forearm crutch which is great, but not enough to move me 1/2 notch down on the EDSS...
Suzq,
I can give you my thoughts, although I'm not a medical person.
You have certainly ran the gamut of treatments, and it appears you have stabilized, and possibly improved a little. This is a big accomplishment.
At this point, your biggest fear seems to be further progression. I get the feeling from your write up that your neuro is a bit of a 'lets try this and see how it works' kind of a doc. To me this is both good and not so good. Being open to ccsvi is a definite plus, but trying out heavy duty meds like Methotrexate on someone who appears to be stable seems questionable.
It appears that the CCSVI treatments have helped you (why twice - restenosis?), and you are now following a good diet and lifestyle. Realize that if you start on strong meds, you may feel worse than you do now, and the meds may or may not stop any further progression. Why not just wait a few months and let your body rest up and heal. If you feel yourself again slipping back, first look into another doppler, then consider going back on meds. If you do want to think about taking meds at this point, have you looked into LDN? This is quite harmless, and has helped a lot of people. Your doc sounds like he may be open to it.
I can give you my thoughts, although I'm not a medical person.
You have certainly ran the gamut of treatments, and it appears you have stabilized, and possibly improved a little. This is a big accomplishment.
At this point, your biggest fear seems to be further progression. I get the feeling from your write up that your neuro is a bit of a 'lets try this and see how it works' kind of a doc. To me this is both good and not so good. Being open to ccsvi is a definite plus, but trying out heavy duty meds like Methotrexate on someone who appears to be stable seems questionable.
It appears that the CCSVI treatments have helped you (why twice - restenosis?), and you are now following a good diet and lifestyle. Realize that if you start on strong meds, you may feel worse than you do now, and the meds may or may not stop any further progression. Why not just wait a few months and let your body rest up and heal. If you feel yourself again slipping back, first look into another doppler, then consider going back on meds. If you do want to think about taking meds at this point, have you looked into LDN? This is quite harmless, and has helped a lot of people. Your doc sounds like he may be open to it.