Questions About Moving From Relapsing Remitting to Sceondary Progressive MS

[Jen's Solitude]

I have been doing a little research on this subject because I suspect I am no longer r/r. I see my new neurologist in November do I just ask him if I am still relapsing remitting or will he just tell me after he examines me?

I know I will need MRI's done but I am wondering about the walking test EDSS?? and whether that is used in the determination? Since I have had MS 23 years does that automatically move me to SP since I have nerve damage in my right leg?

I haven't had a relapse in 14 months does that enter into the equation at all?

Your answers and insights are greatly appreciated.

[SalpalSally]

I would say that since you haven't had any relapses, you are now SPMS!

[stillstANNding]

OTOH, if you are on something to prevent relapses, that changes the picture.

I haven't had a real blow out relapse since I have been on A, R & now C. I still have symptoms though and bad times. Just not a relapse.

So I think all the modifying drugs have an impact on what MS looks like now.
ANN

[Howie]

I don't even have a Neuro, and haven't had an exacerbation in 16 years. So what am I?

DAR, I guess the point I'm getting at is what difference does it really make what you are classified as. It seems lately, the use of any med is up to the doctor. It may have been tested as being for SPMS, but someone with RPMS can try it if the doctor is willing.

I would see what this new doctor thinks you are now, and why they think so. Pick their brain for anything you want to know. I hope you have a really productive visit!

[agate]

I wouldn't worry too much about what type of MS yours is classified as. These classifications (SPMS, RRMS, PPMS, etc.) are fairly recent and quite fuzzy. There's a lot of wiggle room.

According to the MS Society Webpage, the classifications were set up in 1996. When I was diagosed in 1980, nothing was said about which type of MS it was. They haven't yet figured them out--but in a loose way they've been using them--sometimes--to decide whether you can have one of the disease-modifying drugs.

The MS drugs (with one or two exceptions) have been tested only for relapsing forms of MS. Their labels state that that's what they're intended for. However, many neurologists, including two I've had, don't have a problem prescribing the drugs for people with SPMS. Maybe it's an off-label use. They want to offer us something, and they believe that the drugs just might help those with SPMS as well. My question about whether I should be taking one of the drugs because I had SPMS were ignored, and since I wanted to try the drugs, I didn't insist on getting answers.

More recently the word has gone out that the drugs really don't help with SPMS, and insurance companies are balking about paying for the drugs--and some doctors may not be prescribing them quite as readily any more.



If you haven't had a relapse in years and yet you still have symptoms that come on in a predictable way, and those symptoms seem to be gradually coming on with less and less provocation, that may be SPMS.

For instance, I used to get blurry vision, muscle weakness, numbness, speech problems, and bladder problems if I was in 90' temperatures. Nowadays I get those symptoms if I'm in temperatures of 85' or even lower, and they seem to hit sooner--after less than a minute in the heat sometimes, whereas years ago I might last 20 minutes in the heat before the problems showed up. Over the years I've been able to get away with less and less exertion, heat exposure, stress.

This chart from the MS Society makes the differences in types clear, I think:

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I wouldn't worry too much about the type. Having MS is horrible, and it's often hard when something is going wrong with your body to figure out if it's good old MS acting up or something else. If it is an MS problem, I'm not sure it would matter much if it was SPMS or RRMS. They do wonder if MS might be several different disorders, but they haven't figured that out yet either.

[SalpalSally]

I like that. A lot of wiggle room. Very psyentific.....LOL!

[Cat Dancer]

I don't know that it matters much. Doctors tend to ignore the classifications, and treat patients as they present themselves. I've been labeled SPMS for years...yet am on Tecfidera, supposedly only for people with relapsing remitting MS. Neuro seems to think it will help. Who knows. (I've had MS for 33 years or more..)

[agate]

The EDSS score doesn't seem to be very important either and lately they've been talking about other ways of determining stages of progression. Since everyone's MS is so different from everyone else's, it's a bit of a slippery slope.

[Jen's Solitude]

The only real difference I see in myself is my walking. I can't go as far and my gait is totally different. I thought that meant the nerve damage has increased which meant I might be secondary progressive. Guess I will see what the new doctor thinks.

[Virginia]

Personally, I wouldn't say too much, just let him make his own determination. My Neurologist left me as RR even though I am SP because it is easier to get some of the drugs. But like others have said I wouldn't worry about which one it is, because it is going to do what it is going to do regardless of what you call it.

[Sunshine]

I don't even have a Neuro, and haven't had an exacerbation in 16 years. So what am I?!

Lucky............

[SalpalSally]

I can't even say that Howie....wow, lucky indeed!

[Howie]

In those 16 years, there has been a very subtle progression. So slow, I have to look back and compare what I could do back then, to what I can do now. Add simply aging into the mix, and it gets even more confusing. What is the MS, and what is just getting old.

[Virginia]

There is a big difference in getting old and having MS in addition. I have friends who are as old or older than I am who can do much more. They have more overall strength, more stamina, more ability to walk further, more ability to travel, more ability to do all the things they want to do. I don't think there is any comparison to a person aging at a normal rate and one aging with MS. I watch people who have heart problems and they can still walk, travel and do much more than I can do - my own brother comes to mind. He is 81 years old with heart problems and diabetes and can still do far more than I can do.

Needless to say we worry about my brother all the time, much more than me, but he still has the ability to enjoy his life and that basically is what I am saying.

[agate]

Personality enters the picture too. There are those who go to doctors,and there are those who avoid them. I suspect that Howie has stayed away from doctors, and let's not forget dentists, when others would have been turning up for an appointment.

Howie is the person who pulls his own teeth with a pliers....