Hi, everyone! I'm fairly new here and have recently been definitely diagnosed with MS. Unlike most of you, I'm older - 58 - and have probably had the condition for about 12 to 15 years, untreated. My physical symptoms are mild and do not cause me too many problems. My worst symptoms so far are cognitive issues, and some of those episodes get pretty bad.

So here's my question:

I have my first appointment with a new neuro on Monday, 10/17, and he has a reputation for working with his patients. Due to the length of time I've already had this condition and the fact that I have underlying heart disease and diabetes, I'm seriously considering not taking any of the disease modifying drugs.

If you delayed or declined these drugs at first, do you regret it?

If you're on them, do you ever wish you'd never started?

If we were friends, would you tell me I'm dumb as a box of rocks and tell me that I MUST start treatment?

Please tell me what you think - I could use a little advice right now!

I think a lot of factors need to be considered. And it seems while you may find some similarities with others, MS differs in every one. I was DXed in 2002 at 36, NOW I look back and think I had something developing for years before.

I am PPMS not RRMS. Big difference between them and I find between me and other PPMSers. My MS is My MS.

I did not respond to drugs. Tried Rebif for 2 years, tried some Novantone. Rebif made me flu-like, Novantrone made me throw up. Me, I had the need to try. Disapponted but not surprised when nothing worked for me. Othrers get results from meds.

You and your doctor are a team. But you are your greatest advocate and knowledge is power. I try to keep informed, always hoping but not too helplessly hopeful.

Hello whoopdedeaux,

If you delayed or declined these drugs at first, do you regret it?

When I was diagnosed there were no Disease Modifying Drugs. By the time there was (1993 -Betaseron) I choose not to use Betaseron. To this day I have never used a Disease Modifying Drug. I have no regrets. I am 50 years old with symptoms since childhood, diagnosed at the age of 24.

If we were friends, would you tell me I'm dumb as a box of rocks and tell me that I MUST start treatment?

I would never say any such thing . This disease is very individualized and each person has to do what they feel is right for them. There are no guarantees where MS is concerned. Learn all you can about MS and the treatments for it and then make an informed decision.

Best wishes

Whatever course you choose you can always change your mind.

If you delayed or declined these drugs at first, do you regret it?

I did not delay, I jumped on the fastest moment I could. I went straight on Betaseron. Many reasons, but felt it was the drug for me. 3 month blood work revealed my liver enzymes were soaring! I set a clinic record. I was yanked. Forced them to give me 2 weeks off, and then started on Copaxone. Took a full year or longer for it to start to work on me. After year 3 I was begging them to take me off it. I felt sick. I couldnt think. I had huge dents in my thighs and arms and belly from the injections. I had reaction after reaction, but they just kept pushing me. I was told how ill I would be if I refused the meds, and the rates of those who take meds, vs those who dont and I felt worse and worse.

I did regret taking them

Long story short I quit. I did my own research. The drugs were making me way sicker than MS ever could. Now, thats not to say that MS wont raise its head and smack me silly, but FOR ME and I cant stress that enough FOR ME! DMDs were not the answer.

What do I do instead of DMDs

its hard work to not take the DMDs because you have to accept responsibility for your choice. I eat right, I exercise. I eat a clean diet (the makers diet) and I eat small portions. I watch my weight (30 pounds lost!) and I exercise EVERYDAY! even on days when I dont feel I can handle it. If I cant go out for a walk (the best exercise) I do Wii or arm lifts or chair exercises or Yoga. I try hard to keep my body limber and ready for that cure they keep promising. I see my MD every six months and have my MRI each year. I dont eat MSG or high fructose corn syrup, or high sodium, high sugar foods. I eat whole, raw, organic when I can, and when it needs to be cooked I pick the healthy choice. More fish than other stuff, and I take my suppliments.

I wish you the best of luck with whatever you choose. Its a hard choice no matter which lane you pick. In the end you can only pick what is right for YOU and YOUR family.

Welcome to NT! I you will find lots of information and support here. I'm sorry about your definite dx. but know that you are not alone in what you are going through and we are here to help you through this.

As for your questions . . . I didn't delay in taking a DMD. I was dx in January 2006 and started C in March of 2006. I was on it until my prescription ran out. I have not been on it for several months and, quite frankly, I don't miss it at all. However, I question my decision as I seem to be having more symptoms. It could just be coincidental and I had a really bad flare almost a year ago that I'm finally coming out of. Also, there are other options available other than the DMD's. There are quite a few people on NT that take LDN. There are others that take oral meds, and others of us don't take anything. It comes down to a personal choice and given your other medical issues any meds will need careful consideration.

If I were your friend, I would never tell you that you are dumb as a box. I would tell you to consider each option and pick what is going to be best for you. Each of us is different and we react differently to medications. Research, learn, talk with your dr., and then make a decision.

Good luck with your neuro appt. Let us know how it goes.

Hi Whoopddo. I was 1st DXed in 1975 and had my 1st symptoms in 1964.. The only available med was Prednizone and they gave me small doses of that to take, for awhile. It didn't faze my MS.

I went into a full remission and deniel for 17 years. The MS came back with a vengence in 1993. I did 3 days of IVSM, in the hospital. I chose not to jump on Beta, at the time, but later tried Avonex and Copaxone for 7 mos & 10 mos, concluscively...Didn't work for me.

The only med I regret not starting earlier is LDN, which I am on now since 2003. It has helped halt the radical proggression of disabiliy. And it improves my QOL!

MS is an idividual disease with diff. causes/triggers and many of us do not respond to them, other than making us feel sicker, and yet the NMSS heavily suggests that we start on a DMD as early as possible.

If a DMD were available to me in 1976, the Docs would have attributed my long remission to the DMD. But MS does it's own thing and I don't think any of the DMDs can stop it.

The choice is yours, don't be bullied into choosing yes, if your better judgement says no.

Thanks so much to each of you for taking the time to share some insights with me. I can't tell you how much I value each of those responses and the messages they carry.

I am eager to see this new neuro since I selected him based on his reputation for flexibility and thinking outside the box. I do intend to bring up the subject of LDN as a possibility and see how re reacts.

I take so many meds already that my kidneys and liver have already taken a 'hit', so I'm very concerned about side effects especially in combination with what I'm already taking. Many of you have shared cautionary tales about that scenario, and I appreciate it very much.

I'm doing as much research as possible, but I find that it takes me much longer to acquire and process new information than it used to, and that's frustrating. Adderall certainly helps with that, but still...it's a PITA.

I have read each and every response carefully and - at this time - I have decided to skip the disease-modifying treatments. It is my decision and it's based on how I feel at this time - any comments by my friends here have only helped to clarify the question for me, and the decision is entirely mine.

Hugs to everyone, and a huge THANK YOU.

Congratulations on coming to a decision. And, the good thing is, you can always change your mind later if your circumstances change.

Like Sally, I've been taking LDN (after trying C and Beta which only made me sicker) for several years and it's been a great help. I still have MS and still have some symptoms but it is my belief that the LDN has greatly slowed any progression.

MS is such an individual disease. It simply cannot be categorized into a specific set of criteria. What works well for me may not work at all for you. Trial and error is the only "norm" for this disease. I hope your doc is open minded enough to give LDN a chance to work for you. Let us know how your appointment goes!

i was 53 when i was dx'd. i started on copaxone right away and have been on it ever since. i've tolerated it well. i opted out of the interferons because of a hx of depression altho well controlled.

altho i had some slow steady decline (legs weak, stamina poor) i've stabilized. i've never had a flare or ON odd as that seems. i've considered stopping the C but don't want to take a chance on worsening disease at this time. i feel like i traded side effects for daily shots which become fairly routine with time.

please let us know how your appt goes.