Natural Diet / supplements

[mayperl]

Hi everyone!

I've got some questions for anyone who may be following a specific diet or supplement plan w or w/out MS Drugs.  Here's my deal:

I was originally on Copaxone for almost 2 years, but failed it.  Ha!  I love that they say I failed it.  More like it failed me, right?  Anyway.

Next step was to Tysabri because of the amount of progression and extreme symptoms I had experienced "at my age..." so, after balling for days over my fears and got over what that meant for me, I decided to give it a go.

On my 12th infusion they told me I was JCV positive.  I decided to continue for a few more infusions while I pondered over if I wanted to continue. Really, I am just waiting like a stalker for BG-12 to be approved and released.

So, my 14th infusion (last month) was my last and today would be my 15th.  I've notified everyone I needed to that I'm discontinuing and am fully aware that I am "at risk" for another relapse... and potentially a bad one.  Whatever.  It's better than PML in my mind.  Ha!  unintentional pun.  At least I would still have a mind.

Now - I got to thinking - - what can I do to stave off these 7 months (at least)?  I have a b-12 inificiency which I receive monthly injections for.  VITD as well.  I'm on D3 5000 IU

What about diet?  I rarely eat red meat as it is.  Load up on all veggies and fruits - yadda yadda, all common sense stuff.  But is there anything else that maybe I should look into for someone not taking any MS therapy / treatments?

I do get migraines and have topamax for that.  Deep tissue spasticity and pain in hips -- this I am most concerned about as it makes it painful to walk at times... any tips?

any tips for vitamins on numbness?

and my final question is for optic neuritis and stabbing in the eyes...

That about sums it up!  lol

Thanks for any help or references you can give.

Take care every one :)

-Mayperl

[saucygrl]

I use acupuncture to help control my symptoms.  She has me on an herb that is compatible with Tysabri.  My acupuncturist is a licensed medical doctor from Hong Kong so I feel positive about her advice.  I also stay away from gluten because that will make my symptoms worse.  

Good luck on this journey!!
Chris

[dogmum]

Since I'm still waiting for my dx, I'm doing a supplement plan that is a variation of what someone here on the forum shared with me that they do.  I didn't expect that it would help as much as it has, but I can really feel the difference.  I'd be happy to send it to you if you'd like, at which point you should probably check with your doctor on whether it's right for you.  

I have to stay away from gluten as well.  My dietitian here didn't believe me and put me on a super low cal diet heavy on the gluten and I was in the ER in 4 days with binding rib pain that I can't even explain.  It seems that gluten is not a trigger for everyone, but for many it is.  As for the diet, I've returned to a mostly paleo style diet.  There's a book called Minding My Mitochondria by Terry Wahls that is full of great information about diet and MS.  Probably the best that I've found so far, anyway.  

I'm new to this, but haven't found anything to help with stabbing eye pain yet.  If you do find something that helps, I hope you'll pass it back this way.  

-Laura

[cjldb]

I have eliminated all meat except seafood and all dairy. I also supplement with B-12, D3, and fish oil.

[mayperl]

Thank you for the posts.  I've heard a lot about acupuncture for MS and other diseases as well.  A lot of people do well with it.

Dogmum - I'd be interested in seeing what your diet plan is *shrug*.  As much as I love carbs, I don't think my conscience would allow me to eat a heavy gluten diet... that's a recipe for gaining 100lbs. LOL  Hmm... paleo.  I haven't heard of it, but will look it up!  Thank you.  And please send me a PM so we can chat more about your post :)