Multiple Sclerosis

I was diagnosed with MS in March 2003, after experiencing a bout of Optic Neuritis, an inflamation of the optic nerve.  My right eye went blind, as if a dark grey cloth was covering my vision.  I expected glaucoma or a detached retina, but when the ophthalmologist said it was probably MS, I was devastated. 

I was one of the "lucky ones", however, in that my MS was diagnosed with an MRI by the first week of April: so many - too many - people have to wait years and years before they receive their diagnoses.  With MRIs and Lumbar Punches (LP - better known as spinal taps), diagnosing MS is much easier today than in years past, when MS was diagnosed by eliminating all other problems, and the only definitive diagnosis was by an autopsy (little comfort to those suffering!).

Treatments for MS have come a long way as well.  Where once the only treatment was symptom management - usually painkillers - and lifestyle changes were  a must - canes, walkers, wheelchairs - now there are many more options available to make it possible for people to "live" with MS, not suffer from it.

Prevention is the best, obviously.  There are four main medicines, commonly grouped together as the "CRAB" drugs: Copaxone, Rebif, Avonex, and Betaseron.   Novantrone is also one, but doesn't fit into the anagram as well.  Each has its benefits and side effects, so research each one for yourself and discuss them with your neurologist to decide which is best for you.

I started on Rebif, but had bad site reactions, so I switched to Avonex for a year, but I had awful side effects from it, so I am now on Copaxone.  So far it has been terrific.  Now, understand that these medications are shots, so saying that using them has been "terrific" is, of course, relative to the pain and side effects I had on the other two drugs.  I never thought I would be able to inject myself, but it actually has become pretty easy!  I am no longer a "needle weenie" when I go to the doctor's office!  My Relapsing-Remitting (RRMS) form of MS can be debilitating on a short-term basis, as each episode, or "exacerbation", is not usually permanently damaging.  As each exacerbation occurs over the years, however, more and more damage can occur, and the more progressive forms of the disease begin (Primary-Progressive - PPMS - and Secondary-Progressive - SPMS).  A fourth form of the disease, Progressive-Relapsing (PRMS) affects about 5% of the MS population.
This diagram shows how the disease can progress:

{source: http://www.mult-sclerosis.org/msprognosis.html}

Everyone's MS is personal, not just unique.  One person may have completely different symptoms from another, and, more importantly, how they face these challenges is unlike how another faces them.  This does not mean that one person is stronger than another or that one person is a "weenie".  Symptoms can vary from mild to severe, even on a minute-by-minute basis.  This personalization of MS is important for everyone to understand: well-intentioned people often say "That can't be MS, because my friend has it, and they don't have that symptom."  Also, see the website below, detailing another common misconception of MS and other chronic illnesses, by saying, "But you don't look sick."

Answering these misconceptions takes patience on the MS patient's part as well.  Educate yourself so that you can educate those around you, and understand that the "ordinary people" don't understand MS, so teach them. 

Finally, I have recently become a certified Self-Help Group Facilitator. I live in a very small community that has a number of people with MS.  I am beginning a group in late May, and hope not only to offer an environment for people to share ideas and help each other, but to receive that help as well.  I will post details as they arise.  Email me if you have any questions.

 Be well and always stay involved in your wellness.

National Multiple Sclerosis Society of America - Arizona Chapter
{Main US site}

But you don't look sick?

Check out: "ButYouDontLookSick.com magazine is about living life to the fullest with any disability, invisible disease,
or chronic pain and hopes to provide answers to the endless questions of: But you don't look sick?"  And be sure to see "The Spoon Theory" which, to me, best explains not just the day-to-day difficulties people with chronic illnesses and chronic pain feel, but also the minute-to-minute struggle that goes on for them as well.  Thank you Christine Miserandino, for such a great site!