My bf has MS and I want to know everything

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My bf has MS and I want to know everything

Postby Stella3000 » Mon Jul 16, 2012 8:22 pm

:smile: Hi.

My boyfriend has MS and I'd like to learn as much as I can about the disease. I'm hoping that some of you can give me some insight not only about the disease itself but what it's like to live with RRMS. At the moment, he is fine and very healthy; however, I can't imagine what his mind must go through each time he injects himself with meds.

Although my bf is very proactive and responsible when it comes to his disease, I want to make sure I can be there to fill in the gaps. I want to know what doctors he should be seeing and what he should be doing to curtail the side effects of the drugs he's taking (Copaxone and Rebif).

My heart breaks every time I think about all this, but I know the best thing I can do is to be his rock. I hope this forum can help.

Thanks!
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Re: My bf has MS and I want to know everything

Postby DougL » Tue Jul 17, 2012 4:10 am

welcome Stella. i think you have found a great place to learn. we have everything including Drs who are leaders in their fields.

your BF will very much appreciate what you are doing.
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Re: My bf has MS and I want to know everything

Postby euphoniaa » Tue Jul 17, 2012 2:02 pm

Stella3000 wrote::smile: Hi.

My boyfriend has MS and I'd like to learn as much as I can about the disease. I'm hoping that some of you can give me some insight not only about the disease itself but what it's like to live with RRMS. At the moment, he is fine and very healthy; however, I can't imagine what his mind must go through each time he injects himself with meds.

Although my bf is very proactive and responsible when it comes to his disease, I want to make sure I can be there to fill in the gaps. I want to know what doctors he should be seeing and what he should be doing to curtail the side effects of the drugs he's taking (Copaxone and Rebif).

My heart breaks every time I think about all this, but I know the best thing I can do is to be his rock. I hope this forum can help.

Thanks!


Hi Stella, and welcome to TIMS! It's great that you're being so supportive and encouraging to your bf. I think that fact in itself should make a big difference for him.

Although there are actually very few undisputed "facts" about MS, its prognosis, and its treatment, I hope you've already found there's a wide variety of sub-forums here dealing with every aspect of life with MS that we can think of. :smile: There are even entire sub-forums devoted to individual discussions about most every medication.

Here's the one for Copaxone: copaxone-f4/
And here's a link to the one on Rebif: rebif-f6/

My first question (and I'm sure I'm not the only one who wonders this) is: Why was he prescribed both Copaxone and Rebif at the same time? Each of those is one of the basic DMDs (Disease Modifying Drugs) and each is usually a stand-alone treatment. If you check out those forums, however, you should get tons of helpful information. You can ask specific questions of your own there about reducing their side effects, and should get plenty of responses from experienced posters.

Feel free to make yourself at home, wander around the forum, and ask whatever you want. You may get some fabulous advice, you'll likely get a few totally off the wall answers (part of the entertainment we provide here :smile: ) , but also, I'm sure you'll find an empathetic group of people you can unload on.

Best to you and bf!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: My bf has MS and I want to know everything

Postby jimmylegs » Wed Jul 18, 2012 4:44 am

welcome to TiMS stella, i am not a good resource re meds, but if you guys have any questions about the nutrition angle, feel free to ask!
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: My bf has MS and I want to know everything

Postby Stella3000 » Mon Oct 29, 2012 2:49 pm

jimmylegs wrote:welcome to TiMS stella, i am not a good resource re meds, but if you guys have any questions about the nutrition angle, feel free to ask!


Hi, Jimmylegs.

How much of an impact does diet really make? Currently, my bf is not eating wheat, gluten or dairy (except eggs). He also doesn't eat red meat. He feels like this type of diet is an insurance policy but i'm a firm believer that you can change your body with a better diet. Am I at all correct to think that a major diet change can slow down his MS?

Besides what he's doing now, do you suggest anything else he should eliminate or add to his diet?

Thanks in advance!
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Re: My bf has MS and I want to know everything

Postby jimmylegs » Tue Oct 30, 2012 10:29 am

hi :) imho, food certainly has the potential to have an incredible impact. but it's extremely easy to screw it up. say you take an exclusion diet of some kind, then thin it out a little based on personal choices/preferences, you can end up with a poorly balanced diet, even while following the rules on the face of things. personally, i got sick in the first place from mis/malnutrition. i turned things around with major dietary changes (stopped being vegan, went back to omnivorous diet), a therapeutic supplement regimen, and lots of bloodwork to monitor efficacy. i'd say it's smart to cut back on gluten, which allows the body to retain more zinc - but at the same time, red meats like venison, beef and lamb are some of the best dietary sources of zinc.
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: My bf has MS and I want to know everything

Postby want2bike » Tue Oct 30, 2012 4:38 pm

Roger MacDougall had great success with the paleo diet. Think we must figure out for ourselve what the best diet is. Raw fruits and vegetables are a good place to start. There have been studies showing the drugs do not work.

http://www.direct-ms.org/rogermcdougall.html

http://www.youtube.com/watch?v=THddIqz9 ... re=related

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.nytimes.com/2012/07/18/healt ... .html?_r=2
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