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MAMABUGAZ's Photo MAMABUGAZ SparkPoints: (22,581)
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Posts: 4,514
1/3/13 12:43 P

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Sigh! Shelly -- All of these chronic auto-immune illnesses sure complicate life, don't they?!

~ Faith

~ Faith
Leader: Doing It With Multiple Sclerosis;
Plateau Busters!!!!;

2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months;have gained.
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
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SHELLYBEL456's Photo SHELLYBEL456 Posts: 1,669
1/3/13 9:30 A

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Yea still trying to decide what to do my nuroligist says my thyroid has gone crazy lol so trying to get that under control seeing dr today I am taking skinny fiber and been losing weight finally stooped during hollidats over ate gained back few lbs but back on track eating right and losing again :) which for me is so very hard cause my thyroid ;) so very happy but in March I will be looking at new ms Med will see research has made me worried about side effects from the new ones well hope you are all well, michelle

 current weight: 258.0 
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MAMABUGAZ's Photo MAMABUGAZ SparkPoints: (22,581)
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Posts: 4,514
12/10/12 10:18 A

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Shelley --

I'm sorry that Rebif has not seemed to be effective for you. Please consider talking with your neuro about what other options might work better for you. We're all different, and we all respond differently to different meds. I have tried two DMD's, and one of them works much better, for me, at controlling the frequency and severity of flares. For someone else, a different one might work better.

~ Faith

~ Faith
Leader: Doing It With Multiple Sclerosis;
Plateau Busters!!!!;

2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months;have gained.
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
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162.5
145
127.5
110
SHELLYBEL456's Photo SHELLYBEL456 Posts: 1,669
12/10/12 2:03 A

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Thanks everyone yes just more research of what's left I haven't used yet rebif didn't stop flares so still looking at research and what might be good know I need something but don't want to have same issues glad im back and almost down to pre accident weightso happy about that just lots to do to keep moving girl issues Evey month puts me in bed a few days every month so hope you are all amazing


 current weight: 258.0 
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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,745
12/9/12 3:18 P

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I think disease modulating drugs are extremely important aside from the supplements...not everyone works the same on everybody so it might be good if you speak with your neurologist and try another DMD...

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


 current weight: 191.4 
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VALI_T's Photo VALI_T SparkPoints: (109,222)
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Posts: 13,476
12/9/12 2:36 P

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Welcome back. I'm sorry that the Tysabri did such a bad job for you and I totally understand the desire to treat your MS naturally. The thing that has served me the best over the years has been evening primrose oil. I used it long before my MS was diagnosed and it helped me a lot with some issues that I now know may very well have been related to my MS. Vitamin D is also very important for MS patients.

I do have to say, however, that you should not just dismiss MS treatments out of hand. They're not always fun and they do come with side effects, but the whole idea with them is to keep your MS from getting worse and to keep your level of functioning as high as possible so that if/when a cure is ever found you'll be getting cured from a higher level. Personally, I don't really think that there will ever be a "cure" in the sense of totally curing and taking away our MS. But whether there is or not, keeping your level of function and wellness as high as possible is very important to your quality of life.

Regardless of all of that, welcome back. I hope that things go well for you in the future.

There was much rejoicing!


 current weight: 216.0 
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MAMABUGAZ's Photo MAMABUGAZ SparkPoints: (22,581)
Fitness Minutes: (10)
Posts: 4,514
12/9/12 9:26 A

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Welcome back, Shelley. Although I'm a believer in supplements (I take tumeric, 5000mg D3, Omega 3 fish oil, Calcium/magnesium, prodiotics, enzymes, evening primorse oil, etc), I am also a big advocate for taking an MS med.

I know they have side effects, but, at this point, they seem to offer the best bet we have for delaying progression, and for reducing the fx and severity of flares.

Dietary changes can be real helpful too, for some. Different people advocate different diets, and, I'm not on any of them. But, I do try to eat a somewhat anti-inflammatory diet.

~ Faith

~ Faith
Leader: Doing It With Multiple Sclerosis;
Plateau Busters!!!!;

2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months;have gained.
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
180
162.5
145
127.5
110
ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,745
12/9/12 8:57 A

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Hi Shelleybell...I understand what it is to be gone for a while because of the MS...I have these awful "emotional" attacks aside from the other stuff...but not about me...Turmeric is fantastic and won't hurt...I use it...wonderful stuff...Benefiber (generic) is great stuff...Colace is over the counter and good for constipation...the most important part is WATER and FIBER...I went to the new ARNP in my neuro office and she has years of experience...she suggested Vit D3 5000 iu as a neuro protector...and I used Mega Red extra strength until I was switched to Lovaza...that's an Omega 3 fish oil from krill which doesn't give you those awful burps....hope to see you back in the loop... emoticon

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


 current weight: 191.4 
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SHELLYBEL456's Photo SHELLYBEL456 Posts: 1,669
12/9/12 4:21 A

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Been not doing great past few months kinda stopped doing so much last few years since my accident put on 35lbs started on tysabri last December by this November it tried to kill me so now on no ms drug not sure yet what I am going to do have lost back 24 lbs when tysabri last 2 months tried to bring me down weight stoped going down two months no loss so went to a natural helper no matter how I ate my meds cause constipation my dr was Having me take laxitive stimulents in it hurts my stomach so found skinny fiber ithas got me losing inches and weight and no constipation no more been on 1 week started looking for natural thingies to help me not happy with the perscription drugs now but still reasearching what options I know there is a new drug but not yet sold on it but will keep researching options I am taking. B12 shots that's it for ms treatment so hope I stay good till something new is started looking into natural has any one read about turmeric and two other natural things that are suposed to help the brain something turn on not remembering the details dang it booked marked to speak with nuroligist :) might start useing just natural spices don't think they can hurt will see well headed to bed but wanted to say I am back need support while looking for my answer to what next is in my ms journey am liking natural skinny fiber Maybe more natural is my way to go happy journey looking forward to re connecting to old freinds.and new on here please looking for.advice for next step ;)

Edited by: SHELLYBEL456 at: 12/10/2012 (01:50)
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