Question on benign MS

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Question on benign MS

Postby steve7 » Tue Sep 03, 2013 8:53 am

Hello, after 12 years since being diagnosed with MS this is my first time posting to a forum. I wanted to share my story and see if there are others out there like me and if they might have any advice.

I am a male and was diagnosed 12 years ago with MS at age 18. My initial symptoms that lead me to the discovery was slight tingling or numbness in my fingertips. I started treatment on Rebif and have been off and on with Rebif since then. My initial symptoms faded shortly after diagnosis. Occasionally I still might have some slight numbness in my fingertips, but often times it goes away that day or a day later. The severity has also never been as bad as it was when I was first diagnosed. About 5 years ago I had an optical issue that lasted for under a month and has not returned.

Both of my symptoms can be tied to life events where I was heavily depressed and stressed. Also I should note I was smoking at both times during these symptoms appearing which I have since stopped.

I get MRI's done regularly and the reports often show no progression from my previous MRI.

I'm now 30 years old and with Tecfidera coming on to the market, I'm debating making the switch to get away from injections. But that has also started me reliving a question I have had all this time, are my symptoms bad enough to warrant treatment?

I recently discovered a term "benign MS" that seems to describe me. I'm aware its not an official medical term and I can understand why a doctor would not want to risk defining someone as "benign MS". I know it would be a risk to get off treatment but with regular monitoring with MRI's would it be that risky to stop treatment all together? The longest I have gone off Rebif was 3 years and during that time I had no issues and my MRI's were fine.

I do consider myself fortunate given how awful this disease can become, but I also don't want to be taking a medication unnecessarily. I am curious to hear from anyone that may be in a similar situation and how they are handling their treatment.
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Re: Question on benign MS

Postby grandsons4 » Tue Sep 03, 2013 9:17 am

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Re: Question on benign MS

Postby RyanYum » Tue Sep 03, 2013 3:00 pm

You really have no idea when it's going to go down hill for you honestly. I wouldn't medicate with drugs but you might want to look at other alternatives, diet, exercise, herbs, reservatrol. Or you could even go with whip worm therapy. These are all things you can do besides drugs that won't have an effect on quality of life.(i should say dmds)
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Re: Question on benign MS

Postby BadKittyCat » Tue Sep 03, 2013 8:13 pm

It is very true, you can't predict what will happen! For instance, my nero believes I likely had undiagnosed MS for almost 20 years! It seemed to fit the "benign" description.... until only the last 3 years! So yes, keep an eye on things!

Drugs are an individual choice, IMO. I am actually at a stage where Betaseron has improved my life! I doubt I would have stuck with anything, had I been diagnosed sooner. And the newer drugs have pretty scary side effects. So we make our choices and do our best :-)
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Re: Question on benign MS

Postby carolsue » Tue Sep 03, 2013 10:39 pm

Steve, me too. Diagnosed 2004 and on Rebif ever since. No progression in MRIs, no symptoms to speak of. Initial symptoms were numbness and a spasm in my face but the only times I've felt an eye twitch or a numb toe, it was short lived and was when I was fatigued and stressed. I'm also eager to get off the injections and have been looking at the orals...so far the safety and effectiveness profiles haven't persuaded me to switch. I wonder if I need to be on anything at all (and I wonder about long term side effects) but don't want to push my luck. I guess I stay on Rebif for those who care about me?
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Re: Question on benign MS

Postby CaliReader » Wed Sep 04, 2013 7:13 am

Congratulations on doing so well.

I was only recently diagnosed, but have had intermittent symptoms for at least 20 years. This last year I went on a research binge trying to cope and understand.

They have pretty good data from studies about MS over the life span. The percentage of people who don't get disabled eventually is low, but not zero. Also, a larger percentage don't get hit hard until later in life. Also, those studies are of course based on people who were not treated early, because the drugs were not available.

Unlike you, I spent 20 years with benign ms unrecognized by doctors. So I didn't get whatever benefit the drugs bring when used early. In your shoes, I would verify that I actually had ms. (I don't know your facts. This may or may not be relevant). Than, if I had ms, I would look hard at my risks and options. At minimum, I would maximize nutrition, exercise and vitamin D, and stop smoking if I hadn't already. The evidence is clear that smoking is horrible for ms.
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Re: Question on benign MS

Postby steve7 » Wed Sep 04, 2013 7:32 am

Thanks everyone for the replies. I'll have to keep an eye on where they go with the whip worm therapy and I'll do some more research on reservatrol.
So for alternatives I'm curious to hear what others might recommend. I had been taking a multi vitamin but recently read some articles saying that could be bad? For now I'm trying to take a B12 and vitamin D supplement each day, wondering if there is anything else I should add to that?

I think Tecfidera sounds promising but might be a little too much for me right now as far as possible risks and it being new to the market. I guess one advantage I have is that I can afford to be patient and see what else comes out down the road. It seems Tecfidera is doing well so hopefully other drug companies will work to develop competing products. I think for the short term I'm going to suck it up with the shots and stay on Rebif.

Yes I've also asked the question to my doctor if I actually had MS and did seek out a 2nd opinion. Both neurologists said they confirmed it but I guess the only way to be 100% sure is a spinal tap? Not sure I'm too crazy about that, has anyone had one and how bad is it?
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Re: Question on benign MS

Postby MarkLavelle » Wed Sep 04, 2013 2:29 pm

I guess the only way to be 100% sure is a spinal tap?
Actually, that's 100% wrong. Spinal tap results are not considered definitive for MS diagnosis, just 'supporting evidence"...

RRMS dx 3/3/11; Copaxone since 12/1/11
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