anyone want to take a stab at this one?

[LATW]

Doctors nurse called and said my MRI looks pretty stable however there is clinical progression.  I asked her what that meant. She said SPMS.

I told her the doctor talked about PPMS at the last appointment and that was what I really wanted to know about.  She said I probably misunderstood since I had ON and it cleared up there was no way I could have PPMS.  

Well NO, my husband was sitting there and heard it too, but I did not argue with her because she said they would not treat it any differently.

My vision has never returned to normal.


Is it true a person with PPMS would not have ON clear up?  That sounded odd to me. I know it was just the nurse and i need to listen to the doctor.  

Another odd thing is the radiologist report two years ago said I didn't have any activity in my periventricular area but now there are very small areas and the pinpoint area of activity in my frontal white lobe is now a 3mm typical MS shape.  

So now it is either spms or ppms. They confuse me!

LA

[LATW]

Thank you Quix,
yes it is the progression part, no matter what type, that is upsetting. The meds are helping my MRI but not the progression.  Except one could say I might be much worse without the DMD's.

It has been a rough week with several difficult things going on in my life.  I am sure I made too much of this.  

Thank you for the hugs.  ;-}

LA

[Quixotic1]

The significant remission you had from the ON makes SPMS the more likely definition.  However, I have been reading about PPMS recently and there can be plateaus and minor improvements seen in PPMS.  

Rather than fuss on this, because it doesn't change the fact that your doctors are saying "progressive" I would fax his office the question about whether he stated that you have PPMS or SPMS.  Perhaps he misspoke.  Let the doctor straighten this out.  We all know that sometimes the office nurse gets it wrong.

Or, you could get a copy of the last clinic notes and see what he wrote down.  

The determination of progressive is made NOT from the MRI - but from that nature of our symptoms.  It sounds like your symptoms from the ON improved a great deal.  That would show improvement.  We all know that a symptom may improve, but the MRI may not show signs of improvement.  That is what my HP on "Lesions Vs Symptoms" is all about.

The types of MS are based on symptoms.  Sho's discussion about SPMS which is still relapsing is correct.  If the doc's feel that there is still some inflammatory immune activity causing relapses in SPMS, then there is a good argument to continue treating it very aggressively.  However, SPMS that is characterized by no relapses and just ongoing progression is pretty much indistinguishable (from here on out) with PPMS.

The thought that our disease might be in a progressive mode would unsettle us all.  It sort of takes away some of our hope.  But, we need to know that progreesion can be slow or more rapid.  It is what it is.  

I'm sending hugs your way.

Quix

[LATW]

Hi Sho,
I think I need to talk to my neuro more too! ;-)  I will see him again in January. I plan on not letting this bother me because there is nothing I can do about it.


The progression is upsetting and frustrating.  Just to throw a little curve ball in here I was told that my next episode of ON may have just been left over from the first.  They were not certain it was a second ON event.  The MRI showed a slight inflammation that could have been from the first episode.  

That question was never answered for sure.  They did not do my eye orbits this time so I do not know what my right eye is showing now.  They should have done it!

I had brain and c-spine.  I sure wish they would have done my eyes.  

It was 10 months later but my eye doctor said he was not 100% sure I have gotten over the first episode of ON.  

ugh.

LA

[shoshin]

I wrote a post some time ago trying to summarize the original article that put forth these four types. It's at http://www.medhelp.org/posts/Multiple-Sclerosis/Types-of-MS/show/1045115. I think the types were largely done to create categories that they hoped would be useful for clinical trials. It's also important to note that they weren't based on any biological markers or other objective evidence, but rather were developed by consensus.

So far as I understand this, in order to have PPMS, you have to have from the very beginning ongoing progression or plateaus without remissions, although you are allowed to slightly improve at times. By definition, if you ever had a remission, you can't have PPMS.

Before they had these official categories, they sometimes used a category called single attack progressive (SAP). This was a single relapse and (often long) remission followed by ongoing progression that was considered to be similar to PPMS. I often think this is most similar to my situation, but according to the current definitions, the progressive part of this course would be considered SPMS.

If you had ON and it got significantly better and you sustained it (I think from the definition you would have to sustain the improvement for a month for it not to be counted as part of the same event) then you did have a remission. It doesn't have to go back to normal to be a remission; it just has to improve. Exactly how much I'm not sure.

If you start out with RRMS (even just one relapse) and then start to have ongoing progression without periods of stability at a baseline (or mostly without?), then I think they say you have SPMS. This is why it's called secondary.

Some people with SPMS have superimposed relapses and some people don't. If you don't have superimposed relapses, I am not sure there's much practical difference between SPMS and PPMS. There are some neuros who think SPMS is the same thing as PPMS except that the RRMS part has been truncated off. Then there are some who think they're two totally different processes. Who knows?

I don't think the difference particularly has anything to do with how bad your symptoms or problems are, but whether or not you are having inflammatory relapses definitely affects your treatment options.

I think maybe you need to talk to your neuro some more about what this means for you in particular.

I hope this is somewhat useful.

sho

[LATW]

I wish he had never brought it up to start with.  Guess it really does not matter so much in the end.

[jensequitur]

PPMS is thought of as being more a disease of the spine than the brain...

But you have to remember that these designations are stupid and arbitrary.  They're just an attempt to indicate the disease course.  When they decide it's SPMS, it's because you've progressed far enough that they don't think drugs will help you any more.

[LATW]

Ok thank you.  I started with ON and have had slow steady clinical progression with basically stable MRI's.  Hmmm.............THAT is what the doctor, my husband, and myself talked about and that is when he brought up the likely hood that it is PPMS.

crazy nurse.

LA

[coco31]

Hi there,

I think PPMS is diagnosed from the begining at onset.Normally presents with a slow but steady decline from the start.

SPMS follows the course of RRMS. So: If lets say at your inital diagnosis you were having attacks or exacerbations and getting back to or near normal you'd be RRMS SPMS would follow this i.e. you would have to show signs of "clear progession" over a 6 month period" in order for a SPMS diagnosis.

I have RRMS and I too have had optic neuritis and vision did not return to normal.

I think for PPMS and SPMS neurologist look to your EDSS score.

[Lulu54]

ON can and often does resolve itself - this nurse is not getting this straight.  I don't think that matters if it is RRMS, SPMS or PPMS.  

Someone of course will correct me if I am wrong.

good grief, where do they get these doctors and nurses from?

Lulu