[Willow1111]

Hi peeps

I am new to my MS diagnosis and doing tons of research...for days..I am trying to figure out if I should try the shots or just do SWANK diet and be fit...I already have a very positive mind frame so I have that going for me. There are the periodic freak outs but that's ok

Statistically, is one more successful than the other? I,m tring to find studies and so many seem to do great with few to no relapses going natural. I am so very torn.

I was looking for other threads on this but no luck.

I would so appreciate any advice or stats that u know of. Thank u so so much....



Gina

[KittyLady]

Welcome to NT. There are a great group of people here. Shots or no shots is a very personal decision. I was dx 20yrs ago. When I was dx, they didnt have CRABs yet, so I did nothing for my first 10 yrs. In 2002, I tried betaseron and didnt like the side effects. So I quit it after 9 months. 10 yrs later, now present day, I take copaxone and a few other meds like baclofen for spasms and amitriptyline for break thru pain and sleep. There are lots of MSers who dont do meds. I dont think its a right or wrong kinda thing, just a personal thing. Good luck to you.

[Snoopy]

Hello Willow and welcome to NeuroTalk

Statistically, is one more successful than the other?

Unfortunately, there is no answer to your question It's very hard, if not impossible to find any kind of comparison to those who never used a DMD vs those who did. This disease is a crapshoot with no guarantees.

MS IS a progressive disease. The DMDs are to hopefully slow the progression, but again, no guarantee. Some do well on DMDs, some do not.

What I think is more important is how YOU feel about taking a DMD. Could you live with yourself IF you didn't take a DMD a became worse, would you have regrets? If that is the case you have answered your own question...Take a DMD.

There is the other side: You could decide to not take a DMD and have very little progression. Like I said...It's a crapshoot.

I was diagnosed at the age of 24 (1985) with symptoms that go back to childhood. There were no DMDs when I was diagnosed. The first DMD, Betaseron, became available to the general MS population in 1993...by lottery. I had a lottery number but as the time came close I decided not to use Betaseron. To this day, 27 years after diagnosis, I have not used a DMD.

A recent cervical spine MRI as well as a visit to my neuro confirmed what I had suspected...I have had no progression in several years, cervical spine MRI has improved and I have a very low EDSS.

That's MY story. However, I do not advocate the use or non-use of a DMD.

Best wishes in whatever you decide

[Dejibo]

When I was first dxd I decided that I MUST do everything humanly possible to reign this sucker in. I did Beta. my liver hated it. I switched to Copaxone and shot it for 4 years. 3 were ok, and the 4th I begged to be let off. I felt awful! Kept telling my MD but he pushed hard. After a year I dropped it and said NO MORE! I am diet only controlled now and while i have issues, I have no more issues than I had while on the stuff. It was expensive, caustic, and hard to deal with. I did feel like a fighter while I was on it, and now I have to figure out how to live without it.

I hear rumors there is a much safer pill going to be announced in 2013 and it will become the first line of defense. Put out by biogen.

Some folks chose Avonex cause its once a week. (smaller needle now and has an auto injector) or Rebif cause its only during the week and they enjoy their weekends off. Beta is every other day, and copaxone is daily. The first three can cause depressive sx and it scares some folks. They say Copaxone is relatively side effect free, but I wasnt one of those that enjoyed that. Copaxone can also take up to one full year to start working. the first three work right away.

Please speak to your MD. How many lesions do you have? How big of a hammer does he want to use? Are you really high on the disabled scale or still riding low? Does he want you on Tysabri (once a month IV) even tho it too has risks?

After talking to your MD discuss it with the family and decide which one would best fit YOUR lifestyle. Remember, if its horrible YOU CAN STOP.

Best of luck.

[SallyC]

Welcome Willow. To DMD or not to DMD, that is the question.. You can't say you like them or not without trying. I tried two of them..Avonex ans Copaxone...didn't like them.. Some peeps do though so you must be the judge.

Don't let anyone tell you (incluing your Doc), that you must take a DMD. None of them are cures and if you are on one and not doing well, try another one or just stop. The choice is yours.

Hope you'll stay around and talk with us..

[NurseNancy]

hi willow and welcome to NT,

i was dx'd (diagnosed) at 53, rather late for the disease.
i had a hx (history) of depression so i didn't want to take any of the interferons. they can make depression much worse. i also didn't want all the flu like se's (side effects) so i picked copaxone. i traded daily shots for no se's.

i've been on it 9 yrs and have tolerated it well. i did have worsening sx's (symptoms) when i was dx'd to the point where i had to resign my job and give up my nursing career; hense all my nursing "lingo". so far i'm still walking and use a cane. i still drive and i'm independent.

but, that's just my story. it hasn't been a cake walk but i'm relatively stable.

i'd suggest that you keep researching. when i decided i was given videos to watch and reading materials from each drug co. do that if you can.

glad you found us. let us know how you do.

[missj]

[Hi!
As others have said, the decision to treat is very individual.

Keep in mind that the dmds have been around a very short time in the overall history of MS, So while we already know the possible outcomes of the untreated MS. we are just starting to get a picture of how the dmds are modifying the course.

Even Dr's admit that they are only 'moderately effective'. Does this mean that 100% of people might benefit ever-so-slightly, or that a much smaller group of people will get a large benefit?

The Figure 1 chart here is a powerful indication or treating vs nor treating.


http://www.drugs.com/pro/copaxone.html


Also since the current offerings are for treating RRMS only, it makes sense to me to try to keep it from progressing to a stage where no options to treat exist.

Good luck

[offinthedistance]

Well I'd say just the same as everyone else, but, looking after people with progressive disability from MS, I just couldn't sit back and trust diet/lifestyle etc.
So many people who are real sick from this 'wish there was treatment back when they were diagnosed'. It seems wrong to me not to try something/anything that someone has put so much effort into creating and all the people who were tested on stuff, who put their trust in trials etc.
But that's just me. and Beta failed for me, copax is on the way out, Tysabri is my next stop.

[Willow1111]

Crap, lost everything I typed. Will try again

First, Thank you so much everyone for all that info and experience!

I do have a history of depression which scares me about the DMD's. I have RRMS, in the early stages - or so they say. Even though, there are multiple lesions on the brain MRI (still have yet to find out how many. Afraid to know). But more lesions doesn't necessarily mean worse, correct?

2 weeks ago, I started with double vision(mostly but not always, in the mornings), dizzy drunk feeling all day/night and lost of taste on right side of mouth. Went to Dr., was sent for brain MRI right away....rest is history. I just had spinal last week and other blood tests and waiting to find out results of that.

So I am at exactly 14 days since start of this 'exacerbation'. The last 5 days, the double vision was better every morning until the last couple days, where I don't notice any double vision at all in the morning. However, I do get huge waves of fatigue that just hit me out of the blue, several times a day and still do get the dizzy/drunk feeling at certain times (usually when real tired). Most of the taste on right side of mouth has come back. But I still am not back to normal.

I guess overall, 2 weeks isn't bad for beginning to mostly end of an attack. (I am a Reiki III Practitioner so I have been doing lots of Reiki on my own head and around my brain) which I am hoping is making me heal quicker.

Got off track there. Sorry.

I feel so positive about the SWANK diet after reading things like this:

The results were dramatic. Regardless of level of disability at entry to the trial, good dieters did not deteriorate significantly. Good dieters at level 1 on entry had an average final grade of 1.9 34 years later.



I already live my life kind of 'swanky' LOL. Being that, the only difference for me with this diet is I would have to cut out butter and cheese and no cheating ever LOL. I already don't ever eat red meat or fried foods, etc. (yet I am still overweight, sigh)...so there wouldn't be too much for me to give up. Cheese is a hard one though (I come from the Cheese state of WI). But I could do it.

I don't need any additional pains, diseases, weight gain, depression, etc. from pumping myself with chemicals that may or may not help me in the long run.

Oh, such hard decisions. I am seeing the neuro in 5 days and curious but afraid what he will say about the SWANK diet, maybe changing my mind.

My insurance will cover most of the DMD's with a small copay, so that is good but I just don't wanna take that stuff waa..

Maybe I just wait and see while following the SWANK strictly - and if it isn't working good enough for me - then go on to the DMD's.

I have read such AMAZING tales of ppl on the SWANK, and of course they look amazing cause they have lost weight and they talk about no relapses in 10 plus years. etc...

Now, to figure out just how much of certain vitamins to take. ..I will leave that for another post

Thank you so much,
Gina

[ANNagain]

Welcome to the board, Gina. It seems you have a plan.

ANN