multiple sclerosis

Yurippe

After several weeks of fatigue and nerve numbness I was diagnosed with MS last Monday. Looking for anyone out there that is also living with MS. Curious how it has effected your weight loss and fitness goals.

staceyw37

no, but good luck. most important is to treat/manage your ms first and then re-focus on wt loss.

jtsmith34

My husband was diagnosed with MS 4 years ago. It really only effected his workouts when he was having an attack. He doesn't work out every day, but does try to a couple of times a week. What has helped him the most was taking adderall (med. for add). His neuro perscribed it for the fatigue and it has worked wonders. So if the fatigue is really getting to you, talk to your neuro about it.

engineman312

my aunt has it an i'm riding in the NYC MS bike tour in october.

Artemis_Acorn

My mother-in-law began having MS symptoms 40 years ago. She was told by many doctors that it was "all in her head" back then. She was finally diagnosed 10 years after the onset of symptoms about the time I met my husband. While I don't live with it personally, I have been privileged to be a witness to one of the most valiant and courageous personal battles you can imagine. She is now 82. She was told she would be in a wheelchair within 10 years. Three years ago, she finally caved in and got a walker.

There are three things she is absolutely diligent about. Nutrition, exercise and adequate rest. She is always on the lookout for MS-specific information about supplements and other nutritionally based information that she can incorporate. She is faithful with daily exercise, particularly strength training. She only uses light weights, but does an insane amount of repetitions. She has won many monthly awards at her gym for "the most weight lifted" because of the accumulation of weight over all the sets. Her doctors have been stunned to discover that although she has many muscles that have atrophied from the MS, she has grown her other muscles sufficiently that they take over the function of the atrophied ones. She walks into the MS clinic and the people there stare at her because it isn't often that you see an elderly woman with MS who is walking in on her own steam.

She has a hard time sleeping, but will go into the bedroom and lay down and force herself to 'rest', even if she can't sleep, because her muscles need it. She has endured episodes of blindness and paralysis, but I have never heard her complain - all of her energy is focused on obtaining the very best health that she can accomplish. She does seek out the best physicians she can find, and has assembled a medical team that are experts in every aspect of MS.

I wouldn't wish the diagnosis on anyone, but I just wanted you to know that this doesn't signify an end to a quality life - perhaps it even signals the beginning of a new, focused and purposeful phase of life. May God bless you in your efforts to move forward, to have the strength to meet this challenge.

Yurippe

Thank you for your responses. Pretty scary to wake up sick one day and not know what will happen next.

ruststar

I was diagnosed in '99 with relapsing remitting MS. I haven't had an exacerbation in 5 years, and every one I have had has directly connected to stressful events in my life. I participated in a fitness study for MS patients trying to determine what kind of intervention methods will best help MS patients get exercise in their lives (at least I think that was the point). I was probably annoying to them because I was already exercising and I found their "intervention" methods irritating.

For the last couple years I've been thinking that the exercise was helping to stave off attacks - I haven't been using mediation at all after a round of Rebif caused a miscarriage. In the last two weeks I have been feeling the fatigue return, and I'm hoping that's all I experience in this iteration. So far no physical symptoms (I get numbness and weakness in my legs), and I've still been able to exercise in the mornings the last few days.

HMonsterX

My wife was diagnosed with R&R MS nearly 4 years ago. She is now bedbound for the most part, as she cannot move her legs at all, but i hoist her into her wheelchair for a few hours a day. Her speech is now so slurred i can barely make anything out. She has to use a catheter, be hand fed each meal, and all her drinks have to be thickened with Thick & Easy. She has only about 40% control of her hands.

I gave up my job to be her full time carer, but over the last year it's really taken it's toll on me. We now have others carers coming in daily for a couple of hours, and someone comes to sit with her while i go out to my badminton.

The level of incapacity in MS varies wildly. Some get Mild MS, and go on to run marathons. Some get PP (Post Progressive) MS, and its downhill all the way.

The main trouble for me is my wife hasn't come around to that "I will not let this **** beat me", and is still in the "poor me" mindset.

carilyn39

I also have MS diagnosis in 1995. been on copaxon, (daily shot), rebif (weekly shot), avonex(every othere day shot) now i am taking gilennia. ITS A PILL! and praise God I have not had a relapse in over a year almost a year and a half. I have relapsing remitting MS. started with numbness on my left side from the top of my head to the tipps of my toes. my visions is bad in my left eye thanks to optic nuritus. but you know what?!?!? I HAVE MS. ITS DOESN'T HAVE ME. I lost 75 lbs 5 years ago. have been regular exerciseing for 6 years. best thing i ever did for myself. Yes there are sometimes I have to slow myself down. I go to bed real early for a youngish woman. but i also get up pretty early. so it balances. Everybody is different with this diagnosis. some live daily with it, others almost forget they have it. keep a possitlve attitude and learn what you can. Keep active. even if it is just a walk around the block. it will make you feel better. keep your spirts up. friend me if you want.

carilyn39

I am so sorry. keep YOUR spirts up.

this is for HMonsterX n

HMonsterX

I am so sorry. keep YOUR spirts up.

this is for HMonsterX n

I try, but now she is being offered full time rehab, but she's refusing it. There's only so much i can do/say before i start thinking "If she wont help herself......"

jtsmith34

carilyn39,

My husband has been on gilenya for about 6 months and has really liked it. He had been on copaxone before, he did okay on it but hated the daily shots. Have you seen any side effects from it? Is the poor vision from taking the medicine or did you have it before? My husband has to go get another eye test, his neuro said he has to get eye exams every 3 months because of the gilenya.

Catheesw23

I also have MS & was diagnosed about 8ys ago.... for me, I am tired all the time, with working a full time job & being a full time mom.... I am on a roller coaster most of the time with trying to lose the weight, But I have noticed with logging my foods & the exercise I've been able to do since I started this program..... 2wks & I've lost 3 pounds. So, hang in there you'll have moments of energy bursts & the times you just need to rest, your body will definately let you know when its time to stop & rest. Hope this or any other comments you receive may be able to help ~ always, Cathee

Yurippe

My wife was diagnosed with R&R MS nearly 4 years ago. She is now bedbound for the most part, as she cannot move her legs at all, but i hoist her into her wheelchair for a few hours a day. Her speech is now so slurred i can barely make anything out. She has to use a catheter, be hand fed each meal, and all her drinks have to be thickened with Thick & Easy. She has only about 40% control of her hands.

I gave up my job to be her full time carer, but over the last year it's really taken it's toll on me. We now have others carers coming in daily for a couple of hours, and someone comes to sit with her while i go out to my badminton.

The level of incapacity in MS varies wildly. Some get Mild MS, and go on to run marathons. Some get PP (Post Progressive) MS, and its downhill all the way.

The main trouble for me is my wife hasn't come around to that "I will not let this **** beat me", and is still in the "poor me" mindset.

I'm so sorry. I have RRMS and was very scared and angry for the first month. I'm slowly coming to the realization that dwelling on my condition is only hurting me. I can't imagine how I would/will cope if/when my condition progresses. I'm glad to hear that you've asked for help and are getting the chance to have a life outside of caring for your wife.

Thank you to everyone else that has responded. It's good to know that there is hope.

stephanie_88

I am 38 years old and I was diagnosed with RRMS in April 2010. I've been on Copaxone from the beginning. At the time I was diagnosed I was at least 70 lbs overweight. After getting through 5 days of intravenous steroids for the numbness in my left leg I gained more weight.

At first I was angry. Why me? After I went into remission I decided that I could be "poor, pitiful me" or I could fight it by being the healthiest I could be. My New Year's resolution was to lose weight and get in shape. I didn't have any idea how to do that. I joined a gym but only went to yoga classes for the first 2 months. It helped with my poor balance but not so much with the weight loss. I found this site in May of this year. It was the learning tool that I needed. I reduced my calorie intake and I Zumba 5 days a week and strength train 3-4 times a week. I've lost 39 lbs. I feel great. I'm the healthiest I have ever been in my life. I still have more to go but I know how to get there now.

I'm seeing my neurologist on Wednesday and I can't wait. My blood sugar has been high on my last 2 blood draws. I hoping he'll want to do another one this time. I was last there in April of this year and had an MRI. One year after my diagnosis and some of my lesions were almost gone. I now that the nerves can regenerate myelin but the doctor even seemed surprised.

These are my tidbits of advice for what they are worth:
1. Get as much sleep as you can. Know your limits, MS = fatigue if you let it get ahead of you. Stay on top of it.
2. Vitamin D. Get it checked. Almost all people with MS have a deficiency. Don't mess around with the 400 IU RDA. My doc gave me an rx for 50,000 IU once a week and I take 1,200 more every day plus fish oil. My level is back in the normal range.
3. If your balance is off, try yoga. It's also great for relieving stress.

This is not hopeless. I believe the better shape our body is in the more equipped we are to handle the bad things that happen to it. I'm going to dance at my 5 year old daughter's wedding!