what to do now?

Tell us what you are using to treat your MS-- and how you are doing.

what to do now?

Postby suzq77 » Thu Oct 28, 2010 1:04 pm

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?
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Postby LR1234 » Wed Nov 17, 2010 7:02 am

If you are feeling relatively well at the moment with the diets etc I would personally carry on with what you are doing.

What is your MS like at the moment? Are you currently using a walker/scooter? Are you able to work or socialise?

I am pleased for you that things are looking up x
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Postby suzq77 » Wed Nov 17, 2010 7:16 am

I work from home, so that's not an issue. I have a pretty active social life, too. I use one crutch in the house and two outside for short distances (unless I'm having a bad day, then it's the walker).

I have a scooter (w/a lift for my car) for longer distances and hand controls on my car so I can be independent and go places on my own without anyone's help.

I'm stable, MS-wise. What worries me is that is was so aggressive before - if I have another relapse it could be a doozy. But the 12 month follow up of all of the Stanford study CCSVI participants: no new lesions - in fact some patients had fewer lesions or smaller lesions than before.

I think I'm going to play the wait and see game... just hope I'm waiting for nothing!
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Postby jimmylegs » Mon Nov 22, 2010 2:18 pm

hey there, worry can deplete important nutrients already low in ms patients. have you ever gone through and done your bloodwork for all the known low/imbalanced nutrients seen in ms patients? that's some pretty concrete action that you can take now and feel good about providing the best support for your body post procedure.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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