Last reply 2 months ago
Thoughts..

Any thoughts on Benign MS?

I have been symptom free ever since I began treatment nearly 2 years.

With many lifestyle changes to a completely healthy diet and exceersize regimen
I’ve never felt healthier, I’m hopeful to stay on this road for decades to come.

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chezy17
2 months ago

My neurologist mentioned that mine was possibly benign as it’s all sensory relapses and I bounce back from them but time will tell. You can get benign diagnosis in other illnesses so why not MS? I do kinda have an outlook that the glass is half full 💪😊!


isidora
2 months ago

I’ve had similar experiences only sensory! We just have to keep our positive perspective – a healthy mind is a healthy body 🙂


stumbler
2 months ago

@isidora , I’m not one to believe a diagnosis of “benign” MS. Either you have it or you don’t!

But, with your lifestyle changes and the Tysabri, you could well be controlling the MS and keeping it “in its box”.

Do MRI scans confirm No Evidence of Disease Activity (NEDA)?


isidora
2 months ago

I appreciate your opinion! I’ve researched it and there is a lot of controversy on the matter. My latest MRIs have been clear and show no new lesions. (fingers crossed they stay this way) . It could very well mean my treatment plan is working ideally in containing the Relapsing MS (which is what I was diagnosed with).
Due to my case being very mild- I was curious as to what “benign ms” entails. The most important aspect here is my health has been stable latley so I guess that means continue on with how I’ve been handling it so far.


isidora
2 months ago

chezy17
2 months ago

I’m the same way, no-one is saying that we don’t have MS, I just think it’s possible that you can go through your life with having it mildly. I think that is where the controversy pops up, mine is taking a mild path at the moment, it may get worse it may not but I’m not gonna spend time worrying about it, whatever path it takes it will take but I live in hope and hope is a very strong motivator 😊.


stumbler
2 months ago

@isidora , what you’re doing is working for you and that’s great.

Just keep on doing what you’re doing.

My view about benign MS is like saying that someone is a little bit pregnant. You are or You’re not! 😉


arknat
2 months ago

With @stumbler on this one.

I asked my neuro early on about benign MS and he said ‘there’s no such thing as a benign MS but you could be in extended periods of remission’. I guess some could have that extended periods of remission w/o DMTs. But its always beneficial to keep an eye ..


glawsdan
2 months ago

Hi @isidora

When diagnosed I did put to my MS nurse ‘you only get diagnosed with benign MS after you’ve died’… he gave me a knowing smile and stated 15% of those with RRMS don’t progress to SPMS. I think he was implying this was the best you can hope for.

Dan


isidora
2 months ago

@arknat @glawsdan thank you for your input! time and advances in medicine are in our favor


chezy17
2 months ago

So fingerscrossed it never progresses to spms…I’ll take them odds of 15% but I still believe it’s possible to get it mildly, keep doing what you’re doing chick 😊!


breezy19
2 months ago

@isidora I’ve always liked to think of myself as a benign MSer, as my first episode was in 2005, and second in 2016 (with no meds in between, because back in 2005, a single episode didn’t qualify for definite diagnosis and meds). I’ve still been essentially symptom free since the second episode, and on copaxone, but my latest MRI showed a new contrast-enhancing lesion. So tomorrow, I’m changing from Copaxone to Gilenya.
I reckon I might still think of myself as benign, or at least on the mild end of the spectrum, but I’m not a gambler (spent too many years selling lotto tickets to trust the gambling odds, lol), so I’m still going to hit it hard while I can, just in case!!


isidora
2 months ago

@chezy17 that’s all we can do 😊 keep the awesome attitude! @breezy19 I hope things stay under control for you. The odds are in your favor


chezy17
2 months ago

That’s all you can do chick, I think I’ve probably had it since I was about 23 but I was very much physically fit until I had munchkins, who has the time right?! Although now, I make time 😊. That would put me at the magic number of 15 years since my first symptom which disappeared until after I had my second. I’m at that magic number of 15 years but I feel so much better, so can you have it mildly…yeah I think maybe ya can or at least stay positive but that’s how I deal with it. Here’s to everyone managing it positively in their own way 😊.


tog2-0
2 months ago

The white coats really don’t have a clue about its development. Do MRI’s or lumbar punctures give us any definitive answers on having MS, let alone that any lesions shown will actually give any sort of physical symptoms? No, only your symptoms can tell you what your symptoms are, not what they have been or what they will be in the future, but only what they are right now. Anything else is an opinion.
My last “flare up” of stabbing foot pain turned out to be an ingrowing toenail, 🙂 this problem makes you look at every little pain & twitch & instantly blame it on MS.
I’m not saying shit doesn’t happen, I just deal with the shit I’m actually in & not the shit I can imagine.
Because I can imagine some pretty scary shit.

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