nutshell88 01/12/17
Last reply 7 months ago
benign MS state?

Hi
I have MS since 2005.
I dont suffer any disability. My balance isnt great but people who see me never notice.
MRI result has been showing activity. And it keeps damaging further till I got atrophy in my brain in 2014. But I only had two relapses 2005 recovered 99,99% 2010 recovered 97% still balance.

I do not know should I say i have RRMS or benign from age 17 to 30 nothing changed in my activity at all.
Even my neuro avoid to answer or have opposite answer. So what do you think dear msers? X

Nutshell

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vixen
7 months ago

Hello @nutshell88. I want to congratulate you because I think you are the most regular contributor on Shift. It kind of makes my day normal when I see that you have written something! I was diagnosed this year and what I have learnt about RRMS is that even when we are in remission, there is still stuff going on. Plus of course, our bodies are still subject to all the normal aches and pains of life, as well as getting older of course! I had one relapse which kicked off the disease for me a year ago. Over the summer, I had new minor symptoms, worsening of others and yet all the tests and MRI I had in October showed no new leasions, no new activity! How can that be? Anyways, rather than waste time trying to understand it and make predictions for myself, I just wake up in the morning prepared to face whatever comes my way. I take Tecfidera and have no idea whether this is ‘working’ or not, because of course no one can know that. In your case, there has been activity shown but luckily no worsening or disability. I think Shift people have become an unintentional – but welcome – family, united in one great MS mystery. At least we all have each other! X


nutshell88
7 months ago

Thanks @vixen I’m honored to know that.
And yes the weird thing in my case MS keeps making new lesions till it caused atrophy and I feel non. Its quiet polite this ms lol. Thats y i wonder anyone like me does it have a known ms level. 🧐


stumbler
7 months ago

@nutshell88, MS is MS. It’s just the disease course which varies from person to person.

Perhaps you have “lucky” MS…………. 😉


nutshell88
7 months ago

@stumbler maybe.
I hate surprises I hope its not preparing a big surprise for me all this time…


arknat
7 months ago

As per my neuro, there’s no such thing as a benign MS. The fact that you point out that you have had brain atrophy recently, you probably have sub-clinical activity. Still good to know that you’re back almost 95% from most of your relapses.


nutshell88
7 months ago

Hi
I’ve never heard of benign till i signed into this forum. Thats y i wanted to ask about it.
Thanks for your reply. :))


Anonymous
7 months ago

I am classed as benign. Had for 20 years. No relapses. Neurologist said he had never seen a case of someone with benign ms for this length of time suddenly detoriating. I hold tight to that thought. I count myself as one of the unlucky lucky ones. Btw I have numerous small longstanding lesions on mri.


nutshell88
7 months ago

I felt MS since childhood
Visual static since i was in kindergarten and couldnt tolerate spinning games when i was a child but its fine now loads of lesion but they are behaving well
I hope you never get any worse in the future0


celan2go
7 months ago

I can’t sat whether my neurologist considers me to have benign MS. I was diagnosed (with RRMS in 2002) And had a flare up in 2004, but nothing since then. I recently had both a brain and neck/spine MRIs but haven’t heard anything about what was/wasn’t revealed. Apparently, nothing too bad.


nutshell88
7 months ago

I guess my condition is similar to yours then

@celan2go

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