Secondary Progressive MS

[goodeart]

I now have Secondary Progressive MS and I would like to know how one deals with this MS in their lives.😶

[jimeka]

Hi and welcome. Unfortunately not one of us with ms is the same, everyone’s ms is different, but we do have symptoms in common. Fatigue, cognitive issues, falling, foot drop, forgetfulness. Everyone handles it differently as well. Some members on here have found through having ms they have a hidden talent, such as art work. The paintings that are done are out of this world. It’s amazing what people have discovered about themselves. One thing I have found out and that is it’s ok to say NO. You have to learn what your limitations are and accept them, and make the most of each day. Everyday find something to smile about. Come here any time and scream if you have to, we have all been there, we all understand and this is a forum that doesn’t judge, we support each other, have a good laugh and it is a great place for information, so if you have any questions, ask away. Blessings Jimeka 😊

[Sandydemop]

Hi goodeart Maybe you could be more specific in what you are asking for. I was diagnosed with secondary fairly recently. If i can help I'd be happy to share.

[erash]

I like the words: accept, adapt, achieveThough I struggle with acceptance

[Mollyabigail in reply to erash]

I like that. Accept, adapt, achieve.

[Sandydemop in reply to erash]

me too. adapt yes, achieve yes accept sometimes.

[1575]

I have suffered with MS since being diagnosed in 1986-and consider myself fortunate, loss of sensory abilities, muscle spasms, weakness and loss of balance have all affected me but it is only within the last 10 years that I can’t drive and only within the last 6 years that I have had limited individual mobility, I am now in a wheelchair. I have secondary progressive MS. Just remember that you must get up every day and continue to swing the bat do not go gently into night, fight against your fate and fight against this injustice to your life, we certainly did not ask for Multiple Sclerosis, but we do have to live with it.

Favorite Quote:

“In the midst of winter, I finally learned that there was in me an invincible summer.” Albert Camus

[Sandydemop in reply to 1575]

what a powerful quote!

[StacyHayward]

I’m secondary. My neuro changed me because my MRI wasn’t changing and I almost never have relapses. But I’ve still been declining and have lots of symptoms.

I did stay on Rebif though. He said it seems to be working and didn’t want to rock the boat by discontinuing it.

I have started an exercise class twice a week and my legs are considerably stronger. The more I exercise the fewer symptoms seem to bother me.

So really the name change of my MS hasn’t made a difference.

[Mollyabigail]

Hello, goodeart! Welcome! I suspect that I have secondary progressive too, although my neuro guessed and said "probably RRMS." But I have "late onset" MS, (age 60 upon diagnosis), and my journey may go faster than one who is younger. We will learn this secondary thing together! Prayers for a peaceful spirit coming your way. 🙏

[Jesmcd2 CommunityAmbassador]

Hi goodeart want to know how to deal with this MS? You just do... You take it a day at a time, or if you have to, a minute at a time. 🙂Your not alone here though! We get it! So ask away, vent away! We have your back!🤗💕🌠

[BlanketTime1]

i'm sorry for the progression and hope you have a good team around you. also, we're here to 'listen.'🤗

[Frances_B]

You deal with it in exactly the same way that you dealt with your MS before being told its "name" had changed. One good thing is that at least you won't be constantly "looking over your shoulder" to see if a relapse is sneaking up on you without warning. I really don't know why neuros and PwMS make a big thing about the change in "name", it really doesn't mean much at all, except you might have to fight to stay on meds - many neuros seem to think that meds can be stopped, but then some people suffer a massive relapse when they are stopped so it's often safer to stay on them. However, given the weird and awful way health insurance operates in the USA I have no idea if meds would still be covered by your insurance if your MS is changed to being called SPMS.