Dieting with Obstacles - Dieting With Multiple Sclerosis

View Full Version : Dieting With Multiple Sclerosis

07-01-2006, 01:25 AM
Hello Ladies :wave:

I was recently diagnosed with MS in April. I have begun treatment but it was brought to my awareness that the legions could be a few years old. We all know the norms - Excerbations accompanied with facial pain... optic neuritis (coming off of a spell now ;) ) ... limb numbness ... electric shocks down the legs it's enough to make a big girl go :dizzy: ... then :?: ... Let us not forget the Summertime heat ... how do you cope? I've begun drinking plenty of water ... not overdoing it at the gym (a day you play is a day you PAY) ... and I walk early in the morning while it's still cool ... and I work out inside a gym in the evenings until the weather changes. I have noticed a pattern with what I eat. When I eat processed sweets ... pain strikes me almost immediately ... now if that doesn't stop me from slurping down a pepsi ... I don't know what will ... what are you eating? .... I will not let the MS take over ... I'm fortunate to have usage of my limbs ... and a sound mind ... so I'm determined that ... no matter what my future holds ... I will do everything I can now ... to lessen the intensity of my symptoms ... and possibly make way for a normal healthy life ... any other MS soldiers here???? ..... :hug:

07-18-2006, 01:04 AM
yes!! i was diagnosed with MS about 5 years ago. and yeah, the heat is a killer. the worst is the MS related fatigue that doesn't match my energy level at all. sometimes hard to motivate myself to exercise when that weak/tired.

haven't noticed a change with what i eat...luckily.

hope you are well. what MS medication are you on? i am doing daily copaxone shots.

take care of yourself

08-09-2007, 01:36 PM
doh. I just posted a question about interferons. thank you search function. I was diagnosed 2 years ago.

08-09-2007, 01:45 PM
I hope you don't mind my jumping in here. I don't have MS, but my mother did and my sister does. My sister did change her eating habits somewhat to a more whole food/lots of veggies diet and she had great success with losing weight on weight watchers. I think all she did exercise wise was walk when she had the energy (she is lucky to live in a cooler climate though.)

As far as the heat, my mother was able to get her energy bill reduced based on medical need. She always kept the A/C on really low during the summers. Maybe that is something for you to look into. Heat effected her a lot too.

I'm so happy to see that you have a possitive outlook! :hug:

Once again, I hope you don't mind my jumping in here!

08-09-2007, 02:18 PM
I dont mind at all! I really appreciate any knowledge people have with diet/exercise changes and MS - I'm fortunate enough to literally live closer to polar bears than another city... so the body temperature usually isnt a problem.

Thanks so much for the encouragement :) It's so easy to believe I cant control anything because of MS... hopefully I can change more than just my outlook here.

08-10-2007, 07:31 AM
Well I was diagnosed with MS in 1999 after bouts of numbness, falling over and muscular weakness. I had a second MRI scan done the end of last year of the brain (yep I have one ;)) and of the cervical and thoraticic spinal areas I have now multiple lesions over these areas. I have medication for TN (trigeminial neuragia) well 4 different tablets now to try and keep the pain under control.

After I was diagnosed I went on self destruction mode I ate everything that I should not have to try and find solace in food. But of course food is not the answer to our problems.

It is hard to motivate yourself to exercise when you are so tired. But I find it best early in the morning when it is cooler. My exercise at the minute consists just of walking. But I can't walk as far as I drag my leg.

I am luckier than most as I do not live in such a hot climate. But I do have a portable air con unit which is excellent and works wonders on me.

When I changed my eating habits back in March I now have loads of vegetables and fruit. I have less meat now in my diet and have loads more vegetarian dishes.

For the first time I can now see light at the end of the tunnel and feel I should be able to get near or on my ideal weight. This has been with the help and support of people here on 3fc.

08-12-2007, 08:06 PM
I was diagnosed in 1998 after bouts of leg and feet tingling and then double vision. I am on Avonex. I take Neurontin for leg pain and provigil for fatigue.
I had to stop working as a teacher. It was too exhausting. So now I work in an office. The heat also wipes me out. So I try to stay in the air conditioning all summer. I initially lost weight when I was diagnosed, trying to stay healthy, but I started feeling sorry for myself and those little hersehy kisses made me feel better. Now I am paying the price with being overweight. Let's try to stay in touch on this site. Any ideas??

08-13-2007, 05:14 PM
well.. I've been checking back on this thread pretty regularly. I was diagnosed in 05 when I lost vision in one eye... then would wake up every day with a new more disturbing symptom. ha ha I had a good friend buy me chocolate and a card when I was offficially diagnosed.

I was put on Rebif last year though... and now I'm through the woods with drug side effects. I like to think it's helping now?? How would you say Avonex is helping you ninaloy? And how is copaxone train?

So.. are people with MS on here following any sort of diet? My naturopath told me to become a vegan last year... and I did... but I gained weight because there's a lot of vegan junk food out there! I'm not vegan anymore.

It's nice to 'meet' you all.:hug:

08-19-2007, 05:38 PM
I have been on Avonex steadily since 1998 without a relapse. In my thinking, I think the Avonex has kept me relapse free. According to my brain MRI, I have huge areas of plaque, but I am still walking and working. Even though I'm used to the weekly injections, I still want to reward myself with food for having to actually take the shot. I know its not right......:

08-27-2007, 05:25 PM
I don't have MS, but I have systemic sclerosis (scleroderma) with some pretty mean complications, so I understand the frustrations.

In my view, you deserve a reward for being relapse-free!:D Don't beat yourself up over a treat - get something really, really good like imported chocolate, and splurge/celebrate after your shot with a reasonable serving. Then, put it away until next week.

Are you able to exercise? Not only can it burn calories, it can improve your mood, and give you such a great feeling of accomplishment, even if it's something small and slow.

09-19-2007, 01:17 PM
Hello ... It's been over a year after diagnosis on Avonex ... and I'm maintaining a normal life ... now ... as far as weight ... I can't blame my MS for not losing ... But my PCP and Neuro continually tells me to lose weight ... b/c many of my symptoms and discomforts ... can be allievated if I weren't so heavy ... I do lose partial vision (right eye ON) in the heat so my exercising always seems to be cut short out of merely fear ... and out of frustration I don't start up again ... but they both encouraged me to simply walk ... and it has been my greatest joy! I hope to build up to the point where I can partake in aerobics past 18mins ... but I've been able to walk throught the fatigue ... and numbness ... over the last few weeks ... I hope to keep it up and in the meantime build strength for back up when I have my not so good days ...

09-19-2007, 04:08 PM
Hey MadamePJ.... it sounds like we're in similar places. I'm hoping to be the inspiration for my own parents and family despite MS and being on Rebif, the subcuteaneous version of Avonex.

Fear held me back from a lot of physical activity and I've been walking a lot too. I used to do an hour long step aerobics class that would make one of my legs go numb... but now I'm also swimming and riding a stationary bike when I get a chance. The last activity that really helped me deal with MS is pilates.. there are 12 basic moves that help build strength.

I just wanted to say props to everyone managaing the avonex shots. I'm sure you get used to it and all, but as a needle phobic I think it's so impressive :cheer:

09-23-2007, 07:05 PM
Hi everybody Newbie here to 3FC- Im Maria, i was diagnosed right after my son was born in 1993- had my ups and way downs with the whole rollercoaster ride called MS lol- Im not taking any meds for it anymore- i was taking copaxone and my body hated it- so no more of that
someone said something about walking til their foot starts to drag lol i hear ya on that one, same here-
im doing well with weight watchers and managed to shed 15 lbs so far this month- i have not excersised one bit- eeks!
i have osteo arthritis and fibromyalgia too so i have to really pace myself which is a pain in the butt-
either which way im sticking to WW and changing my lifestyle
glad to find this group on here

you all sound very positive which is awesome!


04-26-2008, 06:22 PM
Hi everyone, I too have joined the "club", I was diagnosed April 10th. I woke up one morning in December '07 and couldn't control my left leg. After an ultrasound, x-rays, a visit with a neurosurgeon and 4 MRI's, I was diagnosed by a neurologist. No LP needed *whew*, I had a history and confirmed ON in my left eye.

I will soon be taking Rebif and I need to remove 30-65 lbs (depending on where I want to land). I am 44.

04-27-2008, 02:40 AM
Hey shooting :hug: sorry to hear your bad news. I want to encourage you that you CAN lose weight successfully.. with MS. even on Rebif. Having lost a lot of weight and been on rebif for nearly 2 years.. I would say the two factors combined have given me an amazing quality of life.

Keep us posted on your progress - you can do this even with MS and with those darn injections.

06-29-2008, 02:42 PM
How is everybody doing? I am almost at the end of my first month of Rebif and besides the stinging and the adorable (not) little red circles on my body where the shot was given, it's tolerable. Next week I go from 22 to 44 mcg though, so we'll see what happens. This week I am going to jump start with some liquid/pudding diet stuff I have, plus some Slimfast. I just want to get to under 200 and stay there. My doc says that would greatly improve things.

06-29-2008, 03:33 PM
A shout out to all of you who do water aerobics *YaY*. I don't walk very well/fast so I had to find another cardio method. I work part time at a fitness center so I have a free membership. Water exercise outdoors is awesome! You can do so many things in the water that you can't do on land.

As for diet, I found a thread here on the boards about "The No S Diet" ie: No Snacks, No Sweets, No Seconds except on days that start with S. Google it and see.

06-29-2008, 05:20 PM
It has been a wee while since I checked in this thread. I was diagnosed with MS in 1999 since then I have just trundled along with life. Looking back to what I was able to do I have deteriorated slowly but no specific point in that time I could name that was the cause for this. I was diagnosed with secondary progressive MS recently.

I unfortunately about 6 weeks ago had an exacerbation but I tried to treat this time as maintenance. I have been unable to exercise due to my sensory symptoms and being so unsteady on my feet. During this time I gained and lost the same pound so I was really pleased. I am now on the road to recovery and able to exercise a little :carrot: so this week on the scales on my weekly weigh in I had lost 2lbs :D

Despite having MS I have steadily lost weight over a period of 15 months, maybe not as quick as others but I am pleased at my achievements never the less.

06-30-2008, 12:05 AM
shootingstar - there is hope! the reforumlated Rebif has been available in Canada since early 08.. the stinging is almost non existant and the red welts are waaaay less too. Hang in there!

I've been really struggling with fatigue because of the summer heat.

My neuro says my weight loss is the major factor in managing my MS (I thought it was the Rebif). we can do this kim :hug:

Purple has done A-MAZING. :cheer2: She's done so well!

06-30-2008, 04:52 AM
Thanks Val for the lovely words but you also have done FANTASTIC. I have just seen your new avatar it is a beautiful picture of you and shows wonderfully how slim you look.

I am not on Rebif shootingstar but from my knowlegde it normally gets better over time like Val explained. So just hang in tight over the rough period and hopefully you will soon have the benefits from this medication.

Fatigue is a major factor with many MSer and even worse in warm climates. I am fortunate that I live in a much more cooler climate. If it gets so bad Val the fatigue that all you seem to want to do is sleep try discussing your options with your doctor that may help.

07-17-2008, 06:25 AM

07-17-2008, 06:26 AM
Well…I suppose your neurologist should be able to guide …Good Luck!!!!

01-21-2009, 06:17 AM

My name is Shoshie and I have Multiple Sclerosis. I am 38 years old and I live in Australia. I am on Rebif.
I have had two major attacks in the last year, and have had to stop working.
I had a lap band inserted in 2007. I am glad that I did now as my MS is slowly getting worse.

Just wanted to say hi.:)


01-21-2009, 03:18 PM
:wel3fc: SHOSHIE ~ we have a PHYSICAL CHALLENGES thread in this forum that has two other MS'ers in it; maybe you'd like to come by and chat with us there. Everyone in that thread and this forum have some kind of physical challenges to deal with while trying to lose weight and keep it off.

There is also a SURGERY thread/forum here that you might like to check into; both places have very supportive folks in them. Glad you found us.

01-27-2009, 04:22 AM
I was diagnosed in 1998 after bouts of leg and feet tingling and then double vision. I am on Avonex. I take Neurontin for leg pain and provigil for fatigue.
I had to stop working as a teacher. It was too exhausting. So now I work in an office. The heat also wipes me out. So I try to stay in the air conditioning all summer. I initially lost weight when I was diagnosed, trying to stay healthy, but I started feeling sorry for myself and those little hersehy kisses made me feel better. Now I am paying the price with being overweight. Let's try to stay in touch on this site. Any ideas??

Ditto on the Provigil, it has worked wonders for my energy levels, just be careful if you are taking BC pills, my neurologist forgot to tell us that Provigil affects hormonal BC, boy were we lucky to find out sooner than later. I want kids just not yet!

02-03-2009, 09:15 PM
:wave: hi shoshie!

02-07-2009, 01:29 PM
:welcome2: Shoshie to the thread. I am glad the weight loss tool of the lap band has helped you with the progression of the disease of MS.

I am glad I have lost the weight as well as my MS has deteriorated over time but I am sure that my mobility would have gone altogether had I not lost the bulk of my weight.

02-03-2011, 06:50 AM
I was diagnosed in 2007, after a bout of optical neuritis. I believe that's what they called it. I haven't had any major relapses since being diagnosed. I am on Rebif now steadily (I stopped for about a yr). I hate the boo boos from the injections and side effects. However, I am grateful for my luck thus far. I only really experience the fatigue symptom on a regular basis.

From time to time I get moody, not sure if that's the MS. Oh, and I will never let this disease win! I love that you all are fighters, and all seem to have the same mentality about MS. I know that diet and exercise can greatly improve MS symptoms, which will be a plus to losing the rest of this weight.

02-04-2011, 02:44 AM
Hi Shoshie. I was reading the thread and noticed you live in Australia. Very bad about the storm and flooding. I hope you and yours are okay!

02-04-2011, 02:48 AM
Thanks for sending me over here. Oh yes, MS can make one moody. I am heat sensitive too. Someone asked me once if heat affected me. My reply was, "No... It just makes me CRANKY!!!"

I have learned quite a few tricks over the years to stay cool or cool off quickly.

I wonder why MS doesn't seem to make me hate pizza?