New Here. MS since 2008

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New Here. MS since 2008

Postby MarineSnipersGirl » Thu Sep 20, 2012 3:28 pm

Hello,
New to site. I have had MS since 2008. Currently on Copaxone for treatment.
Previous treatments were Betaseron- could not tolerate and Tysabri- Tested postive for JC virus and doctor stopped treatement. I'm not seeing much change or anything on Copaxone. I feel like my walking has become more labored. I mostly suffer from pain in the hips and very stiff legs and my worst symptom has to be the horrible fatigue which I'm on medication for that as well.

I try to stay upbeat as I can but it's difficult. There are days I just really want to throw in the towel. I just can't imagine life like this forever if not worse but I do try to overcome it best I can. I'm working, and do not want to give up my job. I'm an RN. I have learned to pace myself and I know when to stay home. I can't allow my bad days to interfere with work. A bad day for me would be a really bad day for someone else and I'd never do that to anyone. I have good days but then I will have alot of bad days and this period of absolute just feeling horrible and not able to accomplish much of anything.

I never felt I had relapses ( I was Dx RRMS). Instead I feel like I have never really come out of one.

I could not deal with doing the shots daily so my doctor said every other day was fine, and didn't think that it would make much of a difference doing it that way vs everyday.

I'd love to hear thoughts from others.

Thank you..
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Re: New Here. MS since 2008

Postby jimmylegs » Thu Sep 20, 2012 3:38 pm

welcome to the forum, msg :) hope you can find something that will make your life more bearable.

if you're curious about the nutrition side of things, my 'signature' links below provide some info. personally i just use nutrition (including lab testing), no drugs. so far so good, but i am only 6 yrs in, and i was sort of an obvious case of mis-nutrition anyway :S
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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Re: New Here. MS since 2008

Postby lyndacarol » Thu Sep 20, 2012 4:34 pm

Welcome to ThisIsMS, MarineSnipersGirl. I agree with jimmylegs – I think diet is VERY important. The story of Dr. Terry Wahls and her dramatic improvement with diet and electrical stimulation intrigues me: http://www.TerryWahls.com
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: New Here. MS since 2008

Postby sophie447 » Thu Sep 20, 2012 6:58 pm

MarineSnipersGirl wrote:Hello,
I could not deal with doing the shots daily so my doctor said every other day was fine, and didn't think that it would make much of a difference doing it that way vs everyday.



Hello MarineSnipersGirl!

Don't throw the towel in!! It is hard, but we have to find some balance.

I am on Copaxone too and I know it's not easy, but I don't think the other drugs are better. Your post caught my attention, I am so much thinking about going every other day as I don't have much disease activity and injecting myself everyday truly takes a toll on me. The neuro doesn't like the idea, he recommended 5 out of 7 after the initial 6 months! I am still tempted. It would make it so much easier. We are waiting for BG-12. Not without side effects but at least it's a pill and maybe a little more effective.

Don't give up.

I too beleive that nutritution or at least some supplements can help. I am very much looking at vitamin D, and a lot of research is pointing to the fact that low vit D can be linked to disease activity and relapses.

Good luck and see you around.
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Re: New Here. MS since 2008

Postby MarineSnipersGirl » Sun Sep 23, 2012 7:35 pm

Thanks for all the replies. Going to really check into the nutrition eating links. Thank you so much for that info.
Sophie..thank you..not giving up but boy it this hard.


Do any of you use anything for the pain. I cannot do Gabapentin at all and Bacolofen just makes me feel so loopy.

Any advice?
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Re: New Here. MS since 2008

Postby jimmylegs » Sun Sep 23, 2012 8:56 pm

for the pain, look at vit d3 and magnesium (both commonly low in ms patients). ime absorption of d3 is helped by zinc. a lot. zinc is also known to be lower in ms patients. vit d3 depletion has been linked to bone and muscle pain, and muscle stiffness can be caused by low magnesium levels.

if you want info on dietary sources i can fire some your way. if you want info on supplements read up on the relevant items in my regimen thread, should be everything you need to know in post 1 on page 1 (the summary points). any questions, feel free to ask :)

there are other nutrients that can be linked to pain but i think d3 and magnesium are good ones to try first. so much diverse good above and beyond managing the pain.
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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