What does Progression Really Mean

[Jenny3838]

I am still trying to understand this disease. In my mind it seems as though with RRMS you have a relapse and your symptoms completely go away or mostly go away. OK I get that. But I read on this board that some with RRMS take drugs such as Baclofen. If someone needs that due to spascity does that mean that their MS has progressed? My understanding of spascity is that you have damage to your spinal cord. So if someone has RRMS and they have spascity doesn't that mean that they have progressed? I have also read that people experience bladder problems which also has to do with spinal cord damage so does that also mean that they have progressed? The same with fatigue. If you are RRMS why would you be experiencing fatigue if you have not progressed? These are just issues that I am trying to understand. The last time I saw my neuro, I asked him how I am supposed to feel because I feel normal and he told me I was not supposed to feel anything, LOL He must think I am nuts!!

[Jenny3838]

He did not mean that literally. LOL!!

The last time I saw my neuro, I asked him how I am supposed to feel because I feel normal and he told me I was not supposed to feel anything, LOL He must think I am nuts!!

[0485c10]

I am still trying to understand this disease.

your a woman after my own heart!!!!
with the kind of questions I had in the last 6 years. I don't have time to reply as I would like to right now--but I would like to pass on to you what I have found in the last 6 years.
Noyt a lot of time right now to type, if your interested I will leave my email address in my profile and also respond her as the most that I can. If you email, identify in the subject line that it is you....

This RR-SP transition is tough to understand because its not a black & white issue, but different docs will define it differently. That why it is so confusing- although many are clearly SP and many more are borderline---some doc;s call the borderline SP and some docs don't. And the signs have changed over the years. Its not something easily nailed down for most.

check my profile. i leave my email address fotr a few days, then remove it.

[Jules A]

Sadly MS is a chronic, progressive disease. The reason so many of us take the dmds is to hopefully stall progression because with each flare there is the chance that there will be lasting damage.

What progression means for each individual and how quickly the disease progresses will vary. Unfortunately we don't know how much or when but if I read you correctly the answer is yes to most of your questions: the MS is progressing to some extent in those scenarios.

[Jenny3838]

Thanks 0485c10,
I wrote your e-mail down. You can remove it now. LOL

your a woman after my own heart!!!!
with the kind of questions I had in the last 6 years. I don't have time to reply as I would like to right now--but I would like to pass on to you what I have found in the last 6 years.
Noyt a lot of time right now to type, if your interested I will leave my email address in my profile and also respond her as the most that I can. If you email, identify in the subject line that it is you....

This RR-SP transition is tough to understand because its not a black & white issue, but different docs will define it differently. That why it is so confusing- although many are clearly SP and many more are borderline---some doc;s call the borderline SP and some docs don't. And the signs have changed over the years. Its not something easily nailed down for most.

check my profile. i leave my email address fotr a few days, then remove it.

[Jenny3838]

Thanks JulesA,
It seems so confusing to me because when I read people saying how great the DMD's are working for them because they have not had a relapse in ie. 3 years but they are on some drugs for their MS symptoms, I really don't quite understand what the DMD is doing. I mean if someone is taking drugs for MS symptoms doesn't that mean that they have already progressed??

Sadly MS is a chronic, progressive disease. The reason so many of us take the dmds is to hopefully stall progression because with each flare there is the chance that there will be lasting damage.

What progression means for each individual and how quickly the disease progresses will vary. Unfortunately we don't know how much or when but if I read you correctly the answer is yes to most of your questions: the MS is progressing to some extent in those scenarios.

HI Jenny,

The DMD's are meant to help slow or prevent progression which can be new or worsening symptoms. They aren't meant to treat symptoms. There are other meds for the symptoms. It's confusing but think of the DMD like car insurance. You could still get hit by a drunk driver but hopefully you will be a safer driver.
Ken

[BigA]

Here's my understanding or RRMS:

One day, your immune system attacks your brain and/or spine. This attack damages mylen and creates inflamation. The damage + inflamation make you unable to walk/see/balance, etc. You are now at 70% functioning.

Then

The inflamation goes away (helped by steroids). Now what was inflamed but not damaged is working again. Wow, you can see/walk/balance again. But your vision is a tiny bit worse or it's a little harder to walk or balance. Just a little. And you're tired. You're at 90%. As the months go by, it gets even a little bit beter. So let's say you're 95% so you feel pretty much the same.

Now you have another relapse and go through the same thing and get back to 92%. Still pretty good.

Next you're at 89%. What's in that percentage? You have spasticity, bladder issues and you can't stand the heat. Or you're physically fine, but you're tired and confused.

and on and on through 10 relapses. How much damage are you left with? That depends on who knows what?

This is how I udnerstand it. I don't know how accurate it is. Maybe Redwings will drop in

[KoKo]

Hello

If anyone is visually inclined, here are some graphs explaining and showing various types of MS disability progression:

http://www.nationalmssociety.org/abo...-ms/index.aspx

Take care,
KoKo

[onlyairfare]

Thanks for the visuals KoKo. Like they say, "One picture is worth a thousand words."

I think it is often in our best interest to stay "RRMS" as long as possible because in the US the DMD's are FDA approved for RRMS, not necessarily for the other kinds of MS. So your insurance might cover the medication cost only if your dx is RRMS.

I know my doctors have said that something I think might be a relapse is really just worse symptoms today from a relapse (to my right leg) that happened a long time ago. Lots of ups and downs still, but no new neuro symptoms, say in the other leg.

[JudySz]

dx last summer with rrms. went to neuro again this year, and it is now PPMS....Reasons being, that gait is worse and I do not have mjor high and lows. I just keep getting worse. No change in MRI, but things get worse. Walking is bad, fall more than I used to. Numbness and strength in hand is going downhill...lesions in brain and spine, but I guess psine ones are worse. Steroids help and neurontin. I am thinking aboutgoing off Rebif. I was so shocked when neuro said PPMS, I did not ask what I was supposed to. In hindsight, I do not know why I was shocked cause in my head, I know I was not having any relapses and I was getting wrose, Guess I just was not prepoared for getting PPMS dx.

JudySz

[Mrs.Bones]

Thanks JulesA,
It seems so confusing to me because when I read people saying how great the DMD's are working for them because they have not had a relapse in ie. 3 years but they are on some drugs for their MS symptoms, I really don't quite understand what the DMD is doing. I mean if someone is taking drugs for MS symptoms doesn't that mean that they have already progressed??

Not necessarily. As you said in your original post, you don't always recover completely from a relapse. Any of the symptoms you describe could be residual symptoms from a relapse which might need treatment.

Progression can mean many things. It could be a new trend in not having complete recovery from relapses. One might not mean progression, but a few relapses with residual symptoms might. Progression could also be a slow day to day increase in your existing symptoms. It could be having more frequent relapses or a tendency toward fewer with less good days in between. It means something different for all of us.

The DMDs are intended to slow progression and relapses. They do not stop either or treat symptoms. We take them as a gamble that they'll work and slow it down. As Ken said, insurance.

[mack]

lABELS ARE PROBS FOR INS

Thanks for the visuals KoKo. Like they say, "One picture is worth a thousand words."

I think it is often in our best interest to stay "RRMS" as long as possible because in the US the DMD's are FDA approved for RRMS, not necessarily for the other kinds of MS. So your insurance might cover the medication cost only if your dx is RRMS.

I know my doctors have said that something I think might be a relapse is really just worse symptoms today from a relapse (to my right leg) that happened a long time ago. Lots of ups and downs still, but no new neuro symptoms, say in the other leg.

My doc says that I am SPMS with RRMS episodes. I had a relapse in 2004 that required roids to get me walking. My ins covers copaxone and ampyra. Labels are tricky because of overlaps between RRMS and SPMS.

Steve

[BigA]

My doc says that I am SPMS with RRMS episodes. I had a relapse in 2004 that required roids to get me walking. My ins covers copaxone and ampyra. Labels are tricky because of overlaps between RRMS and SPMS.

Steve

Thanks for the lesson. But that descripton is unbelievable. It just shows how little is known about the disease if the 4 main categories are blurred.

[0485c10]

I'm reading all the replies and its amazing everyone has a piece of the puzzle that is true & everyone has to say in with words and order that it makes sense to them.

here's my try at it. I've got to say it in this order for the jigsaw puzzles to come together.

1. In medicine the only thing that is 100% certain is death after that its just probabilities and theories some theories are more likely.. So if your looking for THE right answer your not gonna find it in medicine. There are often many right answers.

this frustrated me at first, I needed to tell myself over and over I can ask all I want, I just can't have an answers sometimes. I did need to understand that before I took off in pursit of knowledge on this disease

2. MS is a progressive disease in all phase of the disease. It just progresses differently in each phase. In the RR phase the progression is through incomplete recoveries after relapses. The mylen is attacked and the body replaces the myelin anywhere from 1-99%...in SP the progression is continuous and there is 0% recovrery as the damage is done directly to the nerve.In the RR phase some damage is always left, it never really goes to 100%

3. The RR phase is the inflamatory phase, SP is the neuro degenerative phase. Inflamation happens in the inflamatory stage.

4. The transition from the inflamatory phase is not a sudden as a switch, it a gradual transition.
It goes RR->Worsening RR->SP with relapses still present->SP with relapses no longer present.

Or
Inflamatory->inflamatory & neurodengerative combined->neurodegenerative alone.

5. Active lesions(Relapses) are inflamatory events. As it goes from the inflamation stage to the neudegenerative phase recovery after relapses will become less until it stops altogether & the frequency of active lesions and relapses will decrease

6. MS damage is additive. In the RR phase the body will replace the myelin anywhere from 1-99%. It is never at 100% because the replaced myelin is weaker than the original was. The replaced tissue has small pinholes in it, that make the tissue weaker than it was before the lesion.
Recovery my seem to be 100% to the person, but it is not. The replaced tissue is always slightly weaker than the tissue that was there before. Noticed most often in temp(heat), virus, stress , over excertion.

And its additive. MS demylenates. The body replaces the tissue. It slightly weaker than the original mylen was.. Then MS demylenates the slightly weaker tissue and replaces it with tissue that is a little weaker than the slightly weaker tissue.and over and over again. This may be invisible to the person, doesn't feel different until a set point is reached and the invisible to the person, suddenly becomes visible to the person. called the clinical threshold..

(the meds try to slow this cycle down)

7.The MS meds just slow MS down, they do not repair anything. There is a battle going on inside your body with MS demylenating the nerves and your body trying to repair the damage to the best of its ability. The MS Meds, just slow the MS down to give your body an advantage in the competition.

8. Whatever recovery you get after a relapse is entirely due to your body and what your body has given you. A person just has to wait & see what recovery they will get after a relapse.

9. Your last response of those with MS symptoms in the RR stage. Yes it means they have progressed in the RR stage, MS is progressive in all stages. They just aquired their progressions from incomplete recoveries and not by steady decline alone.. And the damage with incomplete recoveries could be anywhere in the brain, optic nerve or spinal cord.

10. When diagnosed my doc explained it to me like this."you have MS. you no longer have a "normal" you have a series of 'baselines" instead and each succeeding baseline will be less than the previous baseline"

11. a doc treats the inflamation with an MS med in the RR stage and when its a combination of inflamation and neurodegeneration(SP with relapses still present)

12. I have read that the treatment goal of RR MS & SPMS with relapses still present, is to keep a person in the best shape as possible, while treatment is available, so when they start the neurodegenerative phase(SP without relapses), where treatment does not exist they start it in the best possible condition.