The Progress of RRMS and PPMS Symptoms - Constant?

[Ness78]

Hi Everyone,

I am just wondering how the symptoms of RRMS and PPMS progress? I have read all over the place that PPMS is a steady worsening of symptoms.  I have had MS-like symptoms (numbness, weakness, stiffness) for fours months now, however, they come and go for several hours at a time and they seem to move around my lower left leg and foot and lower left arm and hand.

So I am wondering, does steady worsening mean constant and is it normal for sypmtoms to move back and forth between the same locations.  

Thanks for your help.  

[HVAC]

Ness it sounds frustrating.

Alex

[Ness78]

Thanks so much for your answers.  I will do a post with proper introduction as suggested by Lulu.  I am just trying to sort out if my symptoms fit into to either pattern of RRMS or PPMS.  I read a post by Quix that mentioned that MS symptoms don't generally 'dance around'.  My symptoms (though they each stay for several hours at a time) tend to dance around between seven or eight different places with numbness and or weakness.  I am currently undiagnosed. Thanks again for your answers.

[HVAC]

PPMS shows up a certain way clinically to a MS Specialist. It takes longer to be diagnosed with PPMS after you are diagnosed with MS. I have very few brain lesions even with a lifetime of MS. It is gradual and subtle. You almost do not see the changes you just realize things are worse over time. I was so used to my symptoms I did not know I had a problem. I never went to a Doctor with a complaint. It was clear doing any Neurological test there was something terribly wrong. It was clear to me I had PPMS because I have never had an attack.

Alex

[COBOB]

Let me add that the hope with early DMD therapy is that those of us with RRMS can delay or even out-live the progression to SPMS or PRMS.    If the DMD can even provide a 30% reduction in relapse,  that can add several years.  This is one of the issues doctors seem to fail to understand.  

Bob

[sllowe]

Hi Ness,

Welcome, nice to meet you. PPMS by textbook is most always defined as progression from the onset without remissions or minor improvements. Like Bob mentions those in the 10% unfortunately.

To answer your question, yes, you absolutely can have issues return from a spot over and over again. The key w/that is the plateau, or slight improvement (for RRMSers). This can happen with, or without an attack or relapse simply due to existing damage.  

Existing damage to myelin or even further damage down into the axons can cause daily or returning symptoms. It's what confuses our definition of attack. I know it has confused me in the past.  You think, it left or improved and now it's back, am I in an attack? That's why it's so important to get to your doctor when things get worse - so a determination can be made.

As for PPMS - steady worsening is definitely not the same as constant. I'd describe constant (to keep my head wrapped around it), I look at constant as comparible to chronic. And, steady worsening as progression. Does that make sense?

I'd venture to say that those RRMSers who eventually are constant/chronic steady worsening are definitely on their way to SPMS.   And if the steady worsening is from the onset then dx would be PPMS or PRMS.

Sorry to be long winded...hope to help. Thanks for joining us,
-Shell

[COBOB]

First, PPMS is about 10% or less of the total MS cases, so it is 1 in 10.  RRMS (Relapsing Remitting is the most common.  In RRMS, there are Flares and then there are symptoms that remain as a result of flares.  Flares are the "relapsing" part of the disease.  A lesion goes active or an older lesion gets to the point where is effects the conduction of an axon an attack happens.  

A lesion on the optic nerve might cause blindness, pain, loss color perception, etc.  That is the attack and it has symptoms.  So the doctor starts IVSM to calm thing down, and symptoms gradually improve over time until you get hit with another attack.  It may resolve completely or partially.  Could be in the same area or someplace else.  To get a diagnosis or RRMS, it has to have the "Hit and get better (or partially better)" pattern.

PPMS is a  "hit and get hit again" pattern.  It has a special diagnostic criteria under the revised McDonald Criteria.

Bob