Multiple Sclerosis Bytes: NO Cane NO GAIN

Thursday, August 30, 2012

NO Cane NO GAIN

No Cane no Gain

I often forget to use my cane when I am in the house ,as there is always a wall or a piece of furniture I could grab onto, if I need to, besides I like to tell myself, I don’t need it. It is a help and a hindrance all at once and so it took some getting used to but now I am glad I have it. It definitely saves me energy and worry and so I am learning to realize that following the doctor’s order by using it all the time does give me an advantage and another way to fight this illness. I am also, fighting progressive MS with IV steroids today. It is my last of a three month regiment. It is not a cure but may help cut down on the inflammation in my brain and body and so calm some of my symptoms and maybe delay progression. Today’s MS Byte is about the four courses of MS. Here the info taken from www.nationalmssociety.org ___________________________________________________________________ Relapsing-Remitting MS (RRMS) RRMS is the most common form of the disease. It is characterized by clearly defined acute attacks with full recovery (1a) or with residual deficit upon recovery (1b). Periods between disease relapses are characterized by a lack of disease progression. Approximately 85% of people with MS begin with a relapsing-remitting course _____________________________________________________________________ Primary Progressive MS (PPMS) PPMS is characterized by progression of disability from onset, without plateaus or remissions (2a) or with occasional plateaus and temporary minor improvements (2b). A person with PPMS, by definition, does not experience acute attacks. Of people with MS are diagnosed, only 10% have PPMS. In addition, the diagnostic criteria for PPMS are less secure than those for RRMS so that often the diagnosis is only made long after the onset of neurological symptoms and at a time when the person is already living with significant disability. ____________________________________________________________________________ Secondary-Progressive MS (SPMS) SPMS begins with an initial relapsing-remitting disease course, followed by progression of disability (3a) that may include occasional relapses and minor remissions and plateaus (3b). Typically, secondary-progressive disease is characterized by: less recovery following attacks, persistently worsening functioning during and between attacks, and/or fewer and fewer attacks (or none at all) accompanied by progressive disability. According to some natural history studies, of the 85% who start with relapsing-remitting disease, more than 50% will develop SPMS within 10 years; 90% within 25 years. More recent natural history studies (perhaps because of the use of MRI to assist in the diagnosis) suggest a more benign outlook than these numbers suggest. Nevertheless, many patients with RRMS do develop SPMS ultimately. __________________________________________________________________________________________________ Progressive-Relapsing MS (PRMS) PRMS, which is the least common disease course, shows progression of disability from onset but with clear acute relapses, with (4a) or without (4b) full recovery. Approximately 5% of people with MS appear to have PRMS at diagnosis. Not infrequently a patient may be initially diagnosed as having PPMS and then will experience an acute attack, thereby establishing the diagnosis of PRMS. More info at http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/what-is-ms/four-disease-courses-of-ms/index.aspx

Where does this MS road lead us?Multiple sclerosis is a progressive disease for which no cure has yet been found. I chose this photo for my first post because it speaks a thousand words. When we look at this photo we don't know were this road began nor do we know where or when it ends. For some this photo speaks of uncertainity and for others the excitment of traveling a journey unkown. As do most people who suffer from MS,everday I wake up to a set of symptoms that come and go throughout my day and I never really know what to expect.

So,Where will this MS Road Lead Us? For many it may lead to debilitating pain, loss and despair.

For example, I recently read a story of a young mother with three small children and whose husband was in a nursing home because of MS. MS had robbed them of their hopes and dreams. For others, MS will lead them closer to their families, their faith and a new set of dreams. In every case MS patients suffer loss that needs to be addressed and pain that needs to be cured. This is a serious disease and we need to find a cure but that will not happen without us first educating the public and doctors about it.Having been misdiagnosed for at least fifteen years, I am creating this blog in the hopes of educating others about this disease and providing encouragement for those who have it.

Where will this road lead us? I took the above photo this past summer, a few months after my diagnosis. It was taken in Block Island and it leads to the Ocean, which for me is a sign of eternity. Who was it that said "Life is the childhood of our immortality"?.. I guess that with or without MS we are all on the road to eternity. Let's embrace the good in every moment of it.

Multiple Sclerosis Bytes

Thursday, August 30, 2012

NO Cane NO GAIN

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