MS : I Feel So Disconnected

Thursday, August 6, 2009

I Feel So Disconnected

I know...It's my own fault I feel this way! I haven't exactly been out there...you know...hobnobbing, making my presence known, speaking up for the cause, grousing to others, glad-handing, sharing my MS... I guess if I'm going to commit, I might as well just grow some, step on out and holler out to others. Sitting here tapping out thoughts to myself isn't doing it. Okay, look out MS world...here goes nothing...

1 comment:

Lisa Emrich said...: Hey Paul,

Shouting out a hollar your way!!

Lisa; September 1, 2009 at 9:07 AM

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WHAT IS MS?

Multiple sclerosis, or MS, is a chronic, often disabling disease that attacks the central nervous system, which is made up of the brain, spinal cord and optic nerves.

Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity and specific symptoms of MS are unpredictable and vary from one person to another.

Diagnosis of MS is usually made between age 20 and 40. MS affects more women than men.

About 400,000 Americans have MS. Most people with MS have a normal or near-normal life expectancy.

FDA-approved medications can reduce the number of relapses and slow down the underlying course of MS.

Source: National MS Society

Me: Until they figure out how to make money on it, a cure most likely won’t be arriving in my lifetime.

WHAT THE MS DOCs SAID THEY REALLY DON'T KNOW MUCH ABOUT:

The doctors said I now have Secondary Progressive Multiple Sclerosis. What does that mean? Life comes slower because I have to be more deliberate. Originally diagnosed September 8, 2008. One thing the doctors have right is telling me that everyone's MS is different. Well, of course. MS indiscriminately attacks the nerves. We have nerves in every square inch of our bodies. It makes me wonder if all the doctors who treat MS really do understand what that means. I once said to my Doc something is bothering me and she replied, with no thought, "That isn't MS!" I wonder how she can make such an immediate proclamation, first. Anyways, she is no longer my MS Doc. I'm not looking for sympathy, from my MS Doc. I just want a prescription, to be honest. But, after about 35 years (and counting, since I first wrote that) of exhibiting different MS symptoms, it makes sense that my MS Doc really wouldn't know... No one knows but the person who has MS, what their MS is.

HISTORY OF MISUNDERSTANDING MS

1890's - caused by the suppression of sweat; treated with herbs & bed-rest; life expectancy after diagnosis was 5 years.

1910's - caused by an unknown blood toxin; treated with purgatives & stimulants; life expectancy after diagnosis was 10 years.

1940's - caused by blood clots & poor circulation; treated with drugs that improve circulation; life expectancy after diagnosis was 18 years.

1960's - caused by allergic reaction; treated with vitamins & antihistamines; life expectancy after diagnosis was 25 years.

1996 - caused by autoimmune reaction possibly linked to virus; treated with steriods & immune system regulating drugs; life expectancy after diagnosis is essentially normal for most.

NOW - In my opinion, MS is still misunderstood, but recent breakthroughs in understanding have been made. Stay tuned!