You can watch the following video produced by the The National MS Society that talk about Progressive-Relapsing-MS, a type occurring in a very small percentage of all MSers:
WHAT ARE SOME CHARACTERISTICS OF PROGRESSIVE-RELAPSING-MS?
Is the rarest form of Multiple Sclerosis, accounting for about 5% of the entire MS population.
The person with it would experience acute attacks that may or may not be followed by some recuperation.
People with Progressive-Relapsing-MS in the beginning appear to have Primary Progressive MS (PPMS).
Unlike Primary Progressive MS, Progressive-Relapsing-MS does not reach an area of little variation in the disease or what you would consider to be an area of stability.
It is never easy to feel comfortable not knowing when the next relapse (attack or exacerbation) is going to take place but at least in my case, for example, living with Relapsing Remitting MS (RRMS) allows me to sleep better knowing that if and when it happens, I would recover some if not all of whatever functions were affected by the relapse.
The road of Progressive-Relapsing-MS and the entire set of progressive types of MS, can be rough, totally unpredictable, very challenging, really frustrating and exhausting to say the least. But the same road may lead you to a deeper sense of meaning and self-discovery.
WHAT CAN YOU DO TO HELP YOU WITH PROGRESSIVE TYPES OF MS?First and foremost you should really find a neurologist that you trust and feel very, very comfortable with.This is a MUST if you wish to give yourself a good chance at fighting this disease. Your neurologist should be someone you can tell everything you are feeling – physically and emotionally and really just share what you are experiencing. When you work with a neurologist with the right “vibes”, you’ll know. Always listen to your internal voice.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
MORE ABOUT PROGRESSIVE MULTIPLE SCLEROSIS
The progression of MS is in the nature of the disease itself. The difference seems to reside in the timing of progression. For example, we have a relatively small group of people with MS whose disease is steadily progressive from the onset, and they’re slowly accumulating a little neurologic disability all the time, this is called Primary Progressive MS (PPMS).
The vast majority of us, MSers, have Relapsing Remitting MS and a lot of times those of us with this common form of MS could begin to accumulate disability in a slow fashion, with or without any acute attacks and recoveries. It is sort like going into a second phase of MS – hence the name Secondary Progressive MS.
Watch the following video of Dr. Aaron Miller M.D. explaining the more advance stages – progression – in Multiple Sclerosis:
SO, WHAT CAN YOU DO?
Although a definite cure for MS hasn’t been found yet, there is plenty of options for you even if you are dealing with an aggressive Progressive form of MS.
The first line of defense your neurologist would probably present to you would include one of the disease modifying drugs currently available and approved by the FDA for use in relapsing forms of MS, including Progressive-Relapsing-MS. You would have to decide (with your neurologist’s guidance), if you should start taking Avonex, Betaseron, Copaxone – The original set of MS drugs known as the ABC drugs – or Rebif.
If after some time which should be determined only by your neurologist and you off course, none of these first-line meds. is doing an adequate job of controlling disease activity, he or she will likely recommend switching to Tysabri (Natalizumab) or Novantrone (mitoxantrone).
Regardless of the treatment option you opt for, learning to manage your MS symptoms is really important. Nobody knows you better than you so, give it some time and you will surely learn what kinds of things exacerbate them and what you should keep away from.
To give you an example of what I’m talking about, I now do any errands or activity that demands any physical effort from me first thing in the morning since I know that as the day progresses my MS fatigue starts to increase and I am much more effective that way, get more done throughout the day and keep my MS at bay.
Learning to manage your MS symptoms would only enhance your quality of life.
All the recommendations you have found on this website about maintaining a healthy diet and trying to keep an active life should be part of your strategy to live with MS. Also, you should take advantage of all the mobilityr resources that we have available to maintain our independence and keep safe at all times.
Last, but not least, try to keep an eye on your emotional health. Remember that we MSers are prone to having problems with cognitive functions and this could easily lead to depression and other emotional problems.
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