PPMS Test Indicators

[Deb61]

What are the typical signs of PPMS in cold, hard evidence besides history of progressively getting worse without relapses?  What does the MRI usually look like?  What does the LP look like?  Is there usually a lower lesion load?  Where are the lesions mostly likely to occur?  Is the LP typically negative or positive for o-bands?  Does the LP show an increase in proteins?   Are people with PPMS as likely to develop optic neuritis like people with RRMS?  When is PPMS likely to be diagnosed (age range)?

I have wondered this forever because it appears to me that people who have PPMS go through several years of observations and testing before getting diagnosed.  

[kaz33]

Hi
Just diagnosed at age of 44, but problems I was aware of we're about 6/7 years ago. Problems with walking, falling over etc..

Had 2 difficult childbirth when I was 31/33, never really got fit again, so always blamed my inability to get fit on not working hard enough.

My lesions are on spine, brain and one on my left optic nerve. Haven't had ON and still 20/20 vision. Neurologist says that my left eye is a little slow and my right arm/leg a bit slow. My right hand side is the side that struggles and my left side has over compensated ie: my left hamstring is larger than my right hamstring. My physio is making me do daily exercises to work my right leg and get more balance.

Has it got worse? The walking yes, from when I could walk for miles (I was a big walker) to now, yes. But it does seem to have stabilised in the last few years, as I have done more helpful things like yoga and stretching.

Not really sure about fatigue, as to be honest I can't really remember what it was like to be the girl who could dance all night!

[HVAC]

I have never had ON.  I do not know how common it is in PPMS. I have had double vision since childhood, cognitive issues, and balance problems.  I could not read or do math but I graduated college with honors. I have always had to do things a different way.My reflexes have always been off. You do not notice things you have always had.

  I have only have three brain lesions one in the brain stem. I have Dawson's fingers. I have never been on steroids. I do not get classically fatigued. I rarely take a nap. My whole left side has been effected for the last few years now my right leg is slowly growing numb.

Don't know if any of this helps.

If your sister were labeled PPMS the insurance may not pay for Tysabri it is not FDA approved for PPMS so that is why a lot of Drs. stick to the RRMS cassification.

Alex

[Deb61]

I have been wondering if my sister has PPMS (or SPMS) and not RRMS.  She's unable to walk, and I've watched a steady decline with her.  Her lesions are mostly in the brain stem and do not enhance.  Her lesions look like bb pellets or shrapnel, whereas mine look more oval and are bigger.  She has not been diagnosed with optic neuritis, although she has trouble with double vision.  She's on Tysabri, but it hadn't changed her status with the ability to walk; however, she does report having more energy after her infusions.  

I wonder how many people that have been diagnosed with PPMS have had ON . . .

Alex, have you had ON?  That is very interesting that your MS started in childhood.  What did you notice as a child?  I remember as a child having a feeling a fatigue that wasn't normal.  

Shel, it's good to hear from you, too!  

[HVAC]

PPMS can take longer to diagnose but since there is no treatment to stop progression, it is not as crucial for fast diagnosis. The DMDs are not affective and most insurance won't pay for them for PPMS since they are not FDA approved for PPMS. After diagnosis unless you become really impaired you see the Neurologist every six months and he does tests and sends you on your merry way. The same as before diagnosis.

Only 5% of women with MS have PPMS. You are usually diagnosed in your 40's. There are fewer brain lesions, and less enhancing. The MS usually affects walking. The majority of damage is in the spinal cord.

The person with PPMS describes it as I used to run then I realized I could not run, then I noticed months later I can walk but it is getting harder. That is me to a tee. I can walk many miles but it is harder.

RRMS is more a disease of inflammation the attacks come from the inflammatory process. You have ebbs and flow. Even though they are sometimes many attacks in a year.

PPMS is a disease of degeneration. There are no attacks.

One school of thought is in the future they will be seen as two separate diseases.

My LP was heavy with o-bands but they think my MS started in childhood.

Alex

[sllowe]

From what I've read, you are right - it does take yrs of observations and testing before dx'ing the secondary and progressive phases. Except or unless, there is that progression from the onset. Most are dx'd RR before SP I believe.

I think they are not performing LPs as a general rule on our PPmsers (wouldn't change treatment options or lack of I should say) but there is probably a study we could dig into somewhere out there on the www.  Clinical evidence and testing should weight heavily as cold hard facts in most cases.

We'll have to do some querying our community discussions of the past to find Doc Q's info on PPMS - I know she mentions lesion load and imaging, atrophy, etc.

Don't know if I've helped at all..... long time no chat by the way..:)
-shell