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Diagnosed but not on any meds
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woodworker86 posted:
Hello! I've just recently been diagnosed, the beginning of October, and am hesitant to start taking meds. I'm just wondering if there is anybody out there that does not take meds to manage their MS? I exercise, and eat well and am healthy other than the MS.

I do worry about the residual damage to my CNS as time goes on, and I know that the meds that are prescribed for MS reduce lesion presence that show up on MRI's, etc. But, I also worry about the effects of medication, especially long term medicating. I worry about how my body will be affected by injecting myself with powerful medications that alter my body's activity. So, it's a difficult balance, and It's difficult to determine which is worse.

I don't want to cause health problems by medicating, but I don't want to lose my cognitive, and motor abilities because my brain has turned into a big knot of scar tissue. I know that the meds are approved by the FDA, and are thought of as "safe", but I don't see how there would be no negative side-effects, and even some impact on my long term health by using these powerful medications day in and day out.

I'm not scared of needles, that's not a problem at all. I work at the hospital as a phlebotomist : ) It's just trying to determine what is the best.

My MS seems pretty manageable to me at the moment. I know that it can change at any moment, given a flare. I've only had 2 rather major ones up until now, but have had symptoms for years. I struggle with occasional numbness in my hands and legs, sometimes pain in my legs, and slight short-term memory problems, but the worst is the fatigue. I'm exhausted.

So, any advice is welcome. Thank you all in advance!
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hss0514 responded:
Its really hard to take medicine when you can't tell that its working but by taking something, I feel like I'm being proactive about the disease and at least doing something. I was diagnosed 20 years ago when I had optic neuritis but didn't have any other symptoms until about 2 years ago. It started with tingling in my feet and has progressed to terrible foot drop requiring the use of a cane and orthotic device and arm/hand weakness. I went on meds about a year ago and often wonder if starting drugs sooner would have prevented some of this. Impossible to tell but definitely food for thought.

I figure the potential side effects of the drugs are outweighed by the possibility of less severe problems.
 
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mzfranki replied to hss0514's response:
Hi! I was diagnosed in the later part of Oct, I had numbness that started in my right leg that sorta spread all over the right side of my body, eventully my ear lobes were numb too, I thought it was a pinched nerve and tried to self medicate for 2weeks, then I got a nasty pain in my face that I couldn't ignore, to make a long story short after a week in the hosp I followed up with a neuro who gave me info on drug therapies and Im not intrested in any honestly, I kinda want to do some mri's over a period of time first to watch the progression if any before I start... I dont know, I have never been sick ever, it's very hard to comprehend this new diagnosis... Maybe Im in denial, i don't know but at this point I am waiting to start....
 
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swampster1952 responded:
Hello WW,

Yes, it is a toss up isn't it? Do I or don't I, hmm...

There is no way to tell what course your disease progression will take over time. Your disease progression may not go any further than it already is or...! Either way you go there is a risk of possibly causing more damage to your CNS.

It almost seems like you are damned if you do or you don't. I chose to go with the drug route and have been on a MS drug of one sort or another for the past 10 years. My MS is still slowly getting worse as the years go by and there is no way to tell if I would be worse off or better if I hadn't taken the drugs.

Good luck with your choice,

Dave
 
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joyceannw responded:
I was diagnosed 6 months ago and except for the MS I am also healthy and hesitant to take drugs with so many side effects. My neurologist also agrees that I should't start anythinng yet. I am just waiting and praying. Good luck to you.
 
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AndiJx responded:
This is a tough subject, I was diagnosed 16 years ago, and for most of the 16 years I have not been on any therapy drug. Honestly I regret that decision. When I was diagnosed I had just gotten out of the Navy and was a pretty dedicated runner and general health nut, now if I try to run I land on my face. I don't like the therapy drugs, I have tried most of them "026 Avonex worked the best for me but I hated the needles and having to jab one into my leg every week, I felt alright so I railroaded my neurologist and stopped taking it. While I was on the drug I felt okay and I worked (usually 50 or 60 hours a week — I am a workaholic so for me that was fun) now I am on disability and stay home all week, which I don't like, it is boring.

That has been my experience, yours could be quite different "026 but if I had it to do over again, I would stay with the Avonex harpoon and keep praying for a cure. (Had I stayed on the drug when the cure came I might not have to deal with the damage that has already been done.)

So my advice is this: discus the available options with your neurologist pick one and try it, if it doesn't work try a different one. In the needle group I think Tysabri is the most effective, but it also has the scariest side effects (possibility of PML and death — but of the thousands that take the drug I think PML has only happened to 8 people and only 3 of them died, they monitor you pretty close.) Avonex is the next in line, huge IM needle and in the beginning the side effects Suck.
A lot.
But they do fade and the drug is very effective for most people.
There is also a pill option available now, the drug name is fengolomide (spelling is most likely wrong) and it's label name starts with a G but I don't remember it's exact name. Your neurologist may dig in their heels at this, the drug was just approved by the FDA for MS about a month ago. I'm treated at the Mellen Center of the Cleveland Clinic and my doc is dragging her feet on this.

What ever you decide I wish you well, you are the one that has to live inside your skin.
 
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roberlyn responded:
I didn't get on meds until my MS was definite, although my doctors were the opposite of a lot of doctors on here. they told me to get on meds during my second flareup, when my diagnosis was "probable MS." i dragged my feet and didn't do it, and i forgot about MS for about 5 years.

then i had a flareup that knocked me outta the park. it was the worst thing that's ever happened to me in my life and to this day i walk around dreading another one like that happening.

after that flareup, i gave in (after my doctor literally yelled at me) and started rebif. since then, i've had other flareups but they were extremely different from the ones i had prior to getting on the meds. manageable. annoying, but not devastating.

of course, all people are affected differently. but the thing i particularly wanted to respond to that you said: "I exercise, and eat well and am healthy other than the MS."

this is good but has nothing to do with anything as it relates to your prognosis. your MS can be totally vague one day and then debilitating the next. i even know about an NHL hockey player who has MS -- you can't tell me he doesn't exercise, eat and well and be healthy! (well, except for all the fist fights and cold rinks ;) )

what you do is ultimately up to you, not your doctors, but please keep in mind that a lot of us ate well, exercised and were healthy before MS, and it didn't mean anything at all to the disease.

good luck in your decision! you can always change your mind, in either direction.

robyn
 
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woodworker86 replied to roberlyn's response:
Thanks Robyn - excellent point. That's just what makes it such a difficult thing - i live with the possibility of a debilitating flare, and I know that the likelihood of that happening is decreased if I take meds.

I'm going to see a specialist the beginning of January. I am looking forward to being able to discuss my options with him. Thanks for all the feedback everyone!
 
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Neil S Lava, MD responded:
I understand your concern for long term side effects of medication and realize that you are doing well right now.

10-15% of relapsing remitting patients have "benign" MS meaning that they will do well throughout life without significant deficits.
The problems are that you can have new lesions on the brain on MRI that do not cause symptoms and every new lesion causes irreversible damage. You can not replace this damaged brain tissue.
The 4 injectable medications actually have not shown any long term side effects of significance to date.
Talk with your neurologist some more about therapy.
 
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Tat2Kate responded:
It's a very difficult decision and one that shouldn't be taken lightly. I've been on several therapies over the past 9 years. I started on Avonex. In addition to the gargantuan needle, it knocked me on my butt for the whole next day. After a couple of years of that, I switched to Copaxone. I didn't do well on that one either, did another therapy and then ended up on Rebif. The side effects weren't so bad but it does burn like heck for a couple seconds and I get nasty bruises at the injection site.

Yesterday I was told by my Primary to stop the Rebif because of liver damage as seen by a CT scan. I was okay with that because I was considering stopping it anyway. I'll take the gamble that my MS could get worse than damaging my liver any further.

My sister who has Secondary Progressive MS has been on all the therapies including the chemo. None of it has helped her and her MS continues to get worse. Her MS is a lot different than my MS (as far as symptoms) so I'm not too concerned about mine getting dramatically worse. Maybe I'm just being naive but...

Anyway, your decision is a tough one. Listen to your gut...

Take care,
Kate
 
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eandj3 replied to Tat2Kate's response:
I was diagnosed almost a month ago after finally asking my neuro, "do you think I have RRMS"? and he replied, yes. Prior to that he just said I THINK AND YOU PROBABLY. Throughout our conversations he inadvertently admitted to his ignorance with MS.
So, I am going to see a neurologist that specializes in MS and its treatments but it is in July which seems like forever to wait considering the chance of causing more neurological damage.
In the meantime, I am doing a lot of research on all the drugs. But my neurologist seems to think that it is okay to wait several weeks before I get on any drugs and get a second opinion.
Stay positive and try to keep a healthy mind.
 
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Nancy04232004 responded:
I too am with you on hesitating in starting the MS meds. However, I had no choice in the matter. All MRI's that I have had, starting with the first one, all show that I have "innumerable" lesions in the brain. In other words, there is no question that I have MS. Because of the "heavy lesion load" that I have, MS meds for me are not an option. I do not like the idea of having to take regular injections, but until their is a better MS med or a cure is discovered, this is the only thing I have to go on. At least I can say that the one (Avonex) I am on now, has brought stability to my MS. My advise to you is to go ahead and start one now. This is all we have to use that is available.


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