MS Progressive Types: Secondary Progressive

Hi Lisa,

Let's start with quality of life.  You are right that it is important for every type of MS.  It seems to be an oft used phrase for me over the last several years. It sounds as if you know more on this topic than I do.

The World Health Organization lifted my spirits when they included quality of life in their definition of health.  They also led me to the quality of life research center that says it is important to make life worth living. The main focus here is positive thought. Not a bad idea for a positive perspective on quality of life.

Then the MRI. Again, you may be ahead of me here, too. I read over and over that there is no difference between the MRI of RRMS and SPMS. Conventional MRIs does not provide information that distinguishes between the two types.

However, the water diffusion coefficient (<D>) does distinguish between the two severities. When compared with white matter of control, or non-MS, subjects, both MS values were higher. When compared to each other, the water <D> was significantly higher in SPMS.

Further, there is a negative correlation between the <D> and hypointensity marking axonal damage, and positive between <D> and the EDSS. 

What does all of this mean?  A close examination of the white matter, the water and black holes in our brains indicate the severity and duration of the disease, so it is clear of the image is RRMS or SPMS.  I hope this is enough.  After your lecture, you could probably provide more detail, but this is as far as I can go.

Thank you for your kind words.  I haven't been here long, but I seem to write the longest comment replies!  You all stretch me, and that is good.

Wow, Nancy, how kind you are.

Insurance -- what a frightening topic.  I have had secondary progressive for quite awhile with no problems.  However, getting into the primary progressive forums brought the topic up.  They were saying PPMS has a problem.  When I heard this I thought about forms I have completed, and do not remember any that specified MS type.  I could be wrong, especially since your neuro said it.  I will have to dig into it -- it would be valuable to know.

When the drugs were first approved by the FDA, they were for RRMS only.  However, that is beginning to relax.    I plan to cover this topic in this series on progressive MS, and I think insurance will have to be included.  Thanks for pointing it out.

I need to join Julie and ask for a translation.  Could you explain this water<D> thing again.  I've had many MRIs..no one has mentioned it.  When I ask the dr to share the results, he responds by telling me nothing has changed but MY SYMPTOMS have changed...I don't understand.

I need to join Julie and ask for a translation.  Could you explain this water<D> thing again.  I've had many MRIs..no one has mentioned it.  When I ask the dr to share the results, he responds by telling me nothing has changed but MY SYMPTOMS have changed...I don't understand.

I need to join Julie and ask for a translation.  Could you explain this water<D> thing again.  I've had many MRIs..no one has mentioned it.  When I ask the dr to share the results, he responds by telling me nothing has changed but MY SYMPTOMS have changed...I don't understand.

I need to join Julie and ask for a translation.  Could you explain this water<D> thing again.  I've had many MRIs..no one has mentioned it.  When I ask the dr to share the results, he responds by telling me nothing has changed but MY SYMPTOMS have changed...I don't understand.

Hey, TellnHelen,

Wow. I certainly did not intend to open a can of worms. So sorry. That <D> was the abbreviation used in the articles I read to stand for "water diffusion coefficient" which is a long term for my three fingers to type. I'll try to do better next time.

I gave Julie an explanation as good as my non-scientific mind could handle, but let me go a step further. Many of the articles I read indicated there is often functional loss or worsening of symptoms when the standard brain MRI does not show it. For example, there are often lesions in the spinal cord that show up in a spinal MRI.

Again, sorry. I hope this is helpful.

Hi Julie,

Lisa probably understands it better than I do. It is enough for me to know there are "structural differences," and I'll leave it up to the doctors and technicians to decide what they are and what they mean. However, when Lisa asked her question, I responded at a level of detail I assumed she wanted and understood - she has attended lectures on the topic, and she writes in detail so clearly, so she is way ahead of me!

Now, water on the brain. The word "water" was specifically used in most of the articles I read. I do no know if it means actual water, H2O, or if it is a reference to the fluid that is in and around the brain, healthy or not.

None of the articles expressed concern that there was water at all. It was the amount and interaction that was of interest. These factors are used to "quantify the tissue disruption" and are likely to be independent of larger problems.

My intention in bringing up the structural differences was simply to say someone who can read MRIs can tell the difference between Relapsing/Remitting and Secondary Progression.

I hope this is helpful, and I'm sorry to have made it so confusing in my response to Lisa.  She always does such a good job in her articles.