Is it Secondary-Progressive-MS what you are starting to experience?

Secondary-Progressive-MS is a stage of the illness that appears “after” having lived with Relapsing Remitting MS for some time. How much time? Is difficult to say!

You can watch the following video that was put out by the National Multiple Sclerosis Society to begin your understanding of this type of MS .

Here is a link to download a guide produced by the National MS Society that will help you choose the doctor that will treat your MS. Click here to find out what to look for in your Neurologist

The onset of Secondary-Progressive-MS (SPMS) varies from person to person. One thing we do know now is that before there were Disease Modifying Drugs like Avonex, Betaseron, Copaxone, Rebif, Tysabri and Novantrone, 80 to 90% of most of us, MSers, with Relapsing Remitting MS (RRMS) would eventually develop Secondary-Progressive-MS (SPMS) within 25 years (50% within 10 years) of having been diagnosed.

With this type of MS, you may or may not continue to experience relapses or attacks or exacerbations as you did with Relapsing Remitting MS. In this case, the disease changes from the inflammatory process that is typical of the Relapsing Remitting type of MS to a more steady/progressive phase of the disease characterized by nerve damage or loss.

In other words, Secondary-Progressive-MS (SPMS) is characterized by a more steady progression of symptoms and disability and fewer or no relapses.

SIGNS OF SECONDARY-PROGRESSIVE-MS (SPMS)

It is very difficult to say with absolute certainty to an MSer that he or she is moving to a Secondary Progressive phase of Multiple Sclerosis but some signals to watch for are:

1. You start to notice an increase in disability despite being on one of the Disease Modifying drug Treatments.
2. You may start experiencing more severe relapses and they would affect more than one area of function like typically occurs with Relapsing Remitting MS.
3. You start to notice that even after the worse (acute part) of an attack has passed, some symptoms and/or disability remains.
4. You don’t respond as well as before to steroid treatments.
5. A greater degree of disability measured by the Expanded Disability Status Scale (EDSS) appears. Folks with Relapsing Remitting MS tend to have a score of 4 or less. MSers with Secondary Progressive MS (SPMS) usually have a score of 6 or higher.

   Note: A score of six or higher means that some type of assistance is necessary to walk.

As expected, more “abnormalities” would start to show up during routine neurological examinations. This happens because the brain can no longer compensate for the loss of myelin or axonal destruction due to the progression of MS.

WHERE DOES THE SECONDARY- PROGRESSIVE-MS NAME COMES FROM?

The name is given because this type of MS comes or appears after (is secondary to) Relapsing Remitting MS. It is possible, although very rare, to be diagnosed with Secondary Progressive MS from the beginning. Most likely the Relapsing Remitting phase of the illness was really never discovered. It is absolutely normal to feel scare and somewhat confused when first hearing the news. It is, for all intent and purposes, a different type of beast you are faced with. Your neurologist should be your first and main source of information to help you cope and better deal with Secondary Progressive MS.

HOW DO YOU KNOW IF YOU DEVELOPED SECONDARY-PROGRESSIVE-MS?

It is never easy to declare when a person is starting down the path of Secondary Progressive MS. Most neurologists agree that for MS to move to the Secondary Progressive phase, there has to be a constant build up of disability, completely free of any relapses or attacks. Many neurologists will look for a period of at least 6 months of constant progression of the disease before calling it Secondary Progressive MS.

HOW IS IT DIFFERENT THAN PRIMARY PROGRESSIVE MS?

Secondary Progressive MS always stars to develop after Relapsing Remitting MS and Primary Progressive MS is progressive from the very beginning and never starts with a Relapsing Remitting form of MS.

Some of the things you might start noticing with Secondary Progressive MS are an increased number of difficulties when trying to move around and do all the things that you normally did before or, you might start noticing that your symptoms are becoming worse with time. Please bear in mind that the changes can happen extremely slowly and almost unnoticeable for some time.

Many times it may seem like the MS has stop on its tracks with no obvious changes in your condition.

WHAT I HOPE YOU LEARN FROM ALL OF THIS?

The first and most important message you should get out of reading all of this is that you need to keep your spirit high and keep a positive attitude all the time (or as much as you can, I know there are better days than others but, learning to live with Multiple Sclerosis is a process and takes time and effort.

Another reason why we should keep our faith strong is written in pages of our recent history:

• Only a couple of decades ago almost every person diagnosed with MS was sure to progress to Secondary Progressive MS.
• Just 15 years ago the first drugs to slow the progression of MS became available.
• We are being witnesses to great strides being made in finding better treatments for MS – We now have oral drugs like Gilenya

I am getting closer to my 15th year anniversary living with Relapsing Remitting MS and although it scares me to think that things could start to get worse at any moment, I have total acceptance of my life as it is today with MS and know deep in my heart that It is OK.

MORE LINKS TO ADDITIONAL INFORMATION TO HELP YOU

Click here to review the stages of acceptance you need to go thru

Click here to read more about the most common symptom of MS:MS fatigue

Click here to read about the MS warning signs

Click here to read all about the Invisible Symptoms of MS

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