Looking for answers

[SlmHarris]

I am sitting her thinking of the things that happened to me yesterday and trying to understand myself.

Those out there with secondary progressive MS, How do you deal with the slow motion progression you see your body taking? No major relapse but a constant slow changes.

I am a positive up beat person and try not to dwell. Christmas seems to be my hardest holiday.

I am taking Ocruvis. I have my first treatment tucked under my belt.

The things I have problems with is, patience,buzzing in my ears, fatigue, constant headaches, tremors on and on.

I'm just wondering how your day to day mind frame is, How do you stay positive?

[mrsmike]

Hi SlmHarris, I too have SPMS. I agree it isn't easy, but each day I get up and tell myself that I can get thru it, but sometimes by midday I find myself lacking stamina, energy and that positive attitude. Do we have a choice? Not really, can't send it back :>) ... I wish I could, but we have to keep plugging along. I am taking Rituxim. I have been taking it for the last three years. Please try and stay up...this forum is a great place to vent. There is always someone out there with a sympathetic ear.

[jimeka]

SlmHarris can someone please explain the difference between secondary and primary because I have PPMS and it doesn't seem any different to how you describe what's happening to you. Blessings Jimeka 🎄

[mrsmike in reply to jimeka]

Great question! I've always wondered that myself!

[jimeka in reply to mrsmike]

mrsmike i don't even think the doctors know themselves. 🎄

[mrsmike in reply to jimeka]

May you have a happy, healthy, and peaceful holiday season.

[erash in reply to jimeka]

jimeka i think they've determined that MS is less distinct types and more a continuum of types with blurring of the definitions. So SPMS and PPMS don't typically have relapses (but both can) and there's a slow (sometimes not so slow ) decline.

RRMS is defined by relapses and remissions but often people don't return to baseline after a relapse/exacerbation so they also have a slow decline.

Location of MRI lesions also seems slightly different. More cervical spine lesions, hence more ambulatory problems with PPMS.

Also types of lesions- inflammatory vs no inflammatory which is the prime reason most inflammatory targeting DMTs work for RRMS rather than SPMS or PPMS

At least this is my understanding...please correct me if I'm wrong!

[jimeka in reply to erash]

erash thank you. I have decided to just get on with it, accept that I have ms, and make the most of it. Have a lovely, joyful, Christmas season, blessings Jimeka 🦋 🌈 🎄

[CalfeeChick CommunityAmbassador in reply to jimeka]

Good Girl! We have MS, we all have to deal with it individually as to how it affects our bodies.

[MrBigCat in reply to erash]

erash does that mean that the lesions look different in the different types of MS and that's how neurologists determine what type you have?

[erash in reply to MrBigCat]

MrBigCat I don't think so. It's more related to clinical symptoms.

[MrBigCat in reply to erash]

erash by clinical symptoms does this mean the symptoms you experience and/or the physical tests they give you right in the office?

[erash in reply to MrBigCat]

Yes, MrBigCat

The symptoms u experience

[MrBigCat in reply to jimeka]

jimeka , mrsmike my understanding is that secondary is the next stage after relapse-remitting. With RR you have an episode but than bounce back to some degree. With primary you never had a relapse-remitting. Secondary and primary are the same in the sense that the progression is continuing downward.

I think you right sometimes the doctors are just making a guesstimate.

[Midgey_Midge06 in reply to MrBigCat]

Thats my understanding as well. Primary is wen u skip the RR part.

[erash in reply to MrBigCat]

MrBigCat

Yes, except, relapse can occur with PPMS, just less likely

[SlmHarris in reply to jimeka]

My understanding is with secondary progressive you stay in a relapse . Slow things start to deteriorate.

Jimeka I do not understand completely. I wish i knew the differences.

[jimeka in reply to SlmHarris]

SlmHarris from reading and listening to how people describe their symptoms, I would have a guess and say there are only 2 types of MS, RR and PPMS. Each one has varying stages. In all the years I have had ms, I have never experienced a relapse, just have a slow declining progression of symptoms. I think the doctors just like everything to be complicated. 🎄 🎅🏻 🍫

[SometimesCrazy in reply to jimeka]

Bingo.

[erash in reply to SlmHarris]

SlmHarris

I'm not sure SPMS is "staying in a relapse" it's just that the affects of the relapses from the past is no longer under the surface of the water.

Think of an iceberg. What you see in RRMS is the tip of the iceberg. With SPMS the water level has receded and now we see more of the iceberg.

If I can find the official diagram that depicts this, I will post it

[SlmHarris]

Thank you mrsmike

[doveflyfree]

I was told I have progressive MS. I do have relapses. I'm slowly getting worse!!! I'm confused and don't understand!!?? Can someone help me understand??

[Linda3579]

Hi SlmHarris, my drs best guess is that I have SPMS. I am also on Ocrevus. It’s not always easy to stay positive. I try to eat well and do my exercises. That helps me to feel like I am doing something to help myself. I also keep a gratitude journal to remind my self of the good parts of my day. I think this helps me to look for the good in my day so I can write it in my journal. I’m not sure how important the kind of MS we have is. They are all progressive and we have to do all we can to take care of our bodies and our attitude. It’s not an easy task! Best wishes to you. Linda

[erash in reply to Linda3579]

Linda3579 👍👍👍

[CalfeeChick CommunityAmbassador in reply to Linda3579]

Love the idea of a gratitude journal!

[RobertCalifornia]

My neurologist says that there is a relapsing PPMS. I have been diagnosed with PPMS. I had one major episode in 2011. Not much happened until the next year when I was getting fatigued doing things that I had done for years. The fatigue showed up mostly in my left leg. Early in 2013 I was diagnosed with RRMS by a general neurologist. I changed to a specialist and she changed the diagnosis to PPMS as I did not have clearly defined relapses and remissions, only a steady decline.

[kvw_zkw]

I tell myself I will not let the disease and the changes define who I am. I am me not the disease.

[Jesmcd2 CommunityAmbassador in reply to kvw_zkw]

Awesome attitude kvw_zkw 😀

J 🌠🎄

[agate]

SlmHarris , I was lucky in a way because I was quite disabled for a year or more before I ever thought about MS or even knew about it. I just didn't know what was wrong with me, except that I wasn't able to do much at all--and walking seemed to be the hardest thing for me. But I had 3 jobs at the time and had to do them. I had to find ways of hiding my symptoms and working on in spite of them. When I found out I had MS and was eligible for disability payments so I wouldn't need to work any more, I enjoyed the luxury of finally being able to take care of myself. I could rest as much as I needed to. Being able to rest helps me more than just about anything else but to do that your time has to be your own.

There are about 4 types of MS: relapsing-remitting, primary progressive, secondary progressive, and a rare type sometimes called progressive relapsing. But these classifications are fuzzy, and the experts keep tinkering with them.

Most people start with RRMS (relapsing-remitting) but some may have had RRMS for a while without realizing it and may move to the secondary progressive phase before they're diagnosed. That doesn't make them primary progressive so long as they had a relapsing-remitting phase previously. The secondary progressive phase is a progressive phase that is secondary to the relapsing-remitting phase--it comes after it.

Primary progressive MS (PPMS) comes on without any relapsing-remitting phase. People with progressive relapsing MS have a progressive type of MS but also have relapses and remissions.

[doveflyfree in reply to agate]

Thank you very very very much for that information!!! Very helpful!!! I appreciate you!!

[StacyHayward]

Even with RRMS you can still be gradually worsening without having a relapse. That’s why the meds aren’t a cure. They help but the disease is still active. I haven’t had a true relapse in three years, but I am very slowly progressing. But still definitely RRMS.

[SlmHarris]

I was diagnosed in 2003. I have been with the same Dr since 2006.

I started out RRMS . As time went by I was not having any major relapses but I was gradually progressing in symptom wise.

I am on Ocruvis hoping it will slow down my progression.

[CalfeeChick CommunityAmbassador]

I have barely been diagnosed a year right now, my MS specialist declines so far to identify a stage. I just seem to have the same symptoms, gradually getting worse. Meds increased in October has made the most positive change. How do I stay positive? It's sometimes a challenge, but there's not much I can do about it, but research and work with my docs to give me the best care we can. It helps that my Pastor is also a friend and we can pray together often and receive the spiritual lift of knowing I am not alone, that the Almighty Healer is working with me.

[SlmHarris]

Thanks everyone! The information is clear but clear as mud lol.

We all know we have MS. I tell myself suck it up and go on!

Best wishes to each and everyone of you!

[Iggyvair]

I am 72 years old and was diagnosed 40 years ago. I know I can't do anything about it so I just continue on. I have given up on some activities, motorcycling, skiing, now I spend more time reading, socializing. I try not to dwell on what I have lost, but I enjoy what I do.

Anytime I find myself getting down I think of Steven Hawking, with his incredible brain and ALS. I am doing OK. 😄

[Doubled51]

CalfeeChick our story sounds a lot alike Down to the progression of symptoms. I’m 8 months dx and have been going downhill since. Dr doesn’t think I’ve had any relapses but I don’t totally agree. But my faith keeps me going. Without God I couldn’t make it some days. But with him all things are possible. I see my neuro Wed to see how things are going.

Donnie

[Ikeeptrying]

I have been diagnosed with SPMS. Started out with RRMS and don't know when it changed to SPMS. I've noticed that several of you with SPMS are on meds (Ocrevus). My neuro won't consider putting me on a drug. He says they're not approved for SPMS. Do any of you taking a drug find that it helps? I've got the most conservative neurologist that ever lived. But if you think the drugs are helping I'll go on a campaign to get on them. Thank you to everyone sharing their story. This is the best site ever!

[SlmHarris in reply to Ikeeptrying]

I have only had one does and it takes a few months to help.

My Dr is trying this 1 because I have a bad heart and that rules a lot of the meds for me 2 I seem to be going down hill and she wants to try to stop the progression.

[MrBigCat in reply to Ikeeptrying]

Ikeeptrying That's what my neurologist said too, that Ocrevus doesn't help with SPMS. I'm still on Copaxone because I could still have RRMS.