This is an explanation of my MS and a pictorial expression compiled by other MSr's I've met on another site I keep my medical information on for researchers and other patients alike called Patients Like Me. It's an awesome resource for us cos it tracks our symptoms and our meds and our progress.
The SINGLE most important fact about MS for everyone is that it is an INDIVIDUAL disease. EVERYONE's MS is different for them. No two people have it exactly the same. The degrees of MS are so varied, there's no measuring it across the board. For some it's a nothing thing in their lives, for others it's debilitating and crippling and incredibly painful. Every single person is different because MS is a disease of the nerves in the brain and the spinal column only. And those two - the brain and the spinal column control every aspect of our bodies- no muscle moves without a nerve telling it how to and if MS tells that nerve that the muscle is now frozen (even if the muscle is healthy) then the muscle freezes stiff. That's called spasticity(one of my most major symptoms). If MS affects the nerve that tells one or both vocal chords it's frozen, it is (and you are hoarse or mute). If MS tells a nerve in your foot its wet, your foot literally feels wet. I live with 8 cats, 4 boys and 4 girls. the 4 boys have been known to get into pissing matches with each other and I'll be walking through my tiled floor house barefoot, hit a spot that feels wet, only to start hunting for the "pee spot" I am sure is there, and realize it's a miscommunication of my nerves! These are my daily symptoms. Those are just a few... there's a multitude of other symptoms far too many to list but suffice to say MS is evil. It's also very difficult to diagnose but it pays to be persistent, even if it takes 20 yrs to get there.
So I thought I'd share ME with you all and give you a small idea of my picture of health these days which took a drastic turn in July '06 when after spray painting some furniture that morning before school, I could not use my right hand for fine motor control tasks- no writing with a pen or trying to button someting, tie my shoes etc. Fortunately I had a regular Doctors appt that afternoon and while trying to make a note, she noticed immeidately the lack of control in my hand and after a few questions (all yes, yes, yes,) she referred me to my neurologist, Dr. Alvin McElveen (nationally known).
Two months later (he's very high in demand) we met, and after a full exam, his initial impression was that I had MS. However, mine is an odd case and after an MRI and the vision tests, they all came back normal, he determined I was negative for MS and we embarked on the next 18months of trying to figure out what it was, until after 18months, clinically, all the symptoms still pointed to MS and the lesions simply don't show up on a standard MRI (3T magnet). My next MRI's will be with a 3T magnet MRI in another city. The clincher was when my right eye developed locked into a permanent conditoin of optic neuritis and diminished color perception and depth judgement.
So now it's official, I have MS. And now the next post will include a little posting but mostly pictures. Thanks for sharing this journey with me.
The SINGLE most important fact about MS for everyone is that it is an INDIVIDUAL disease. EVERYONE's MS is different for them. No two people have it exactly the same. The degrees of MS are so varied, there's no measuring it across the board. For some it's a nothing thing in their lives, for others it's debilitating and crippling and incredibly painful. Every single person is different because MS is a disease of the nerves in the brain and the spinal column only. And those two - the brain and the spinal column control every aspect of our bodies- no muscle moves without a nerve telling it how to and if MS tells that nerve that the muscle is now frozen (even if the muscle is healthy) then the muscle freezes stiff. That's called spasticity(one of my most major symptoms). If MS affects the nerve that tells one or both vocal chords it's frozen, it is (and you are hoarse or mute). If MS tells a nerve in your foot its wet, your foot literally feels wet. I live with 8 cats, 4 boys and 4 girls. the 4 boys have been known to get into pissing matches with each other and I'll be walking through my tiled floor house barefoot, hit a spot that feels wet, only to start hunting for the "pee spot" I am sure is there, and realize it's a miscommunication of my nerves! These are my daily symptoms. Those are just a few... there's a multitude of other symptoms far too many to list but suffice to say MS is evil. It's also very difficult to diagnose but it pays to be persistent, even if it takes 20 yrs to get there.
So I thought I'd share ME with you all and give you a small idea of my picture of health these days which took a drastic turn in July '06 when after spray painting some furniture that morning before school, I could not use my right hand for fine motor control tasks- no writing with a pen or trying to button someting, tie my shoes etc. Fortunately I had a regular Doctors appt that afternoon and while trying to make a note, she noticed immeidately the lack of control in my hand and after a few questions (all yes, yes, yes,) she referred me to my neurologist, Dr. Alvin McElveen (nationally known).
Two months later (he's very high in demand) we met, and after a full exam, his initial impression was that I had MS. However, mine is an odd case and after an MRI and the vision tests, they all came back normal, he determined I was negative for MS and we embarked on the next 18months of trying to figure out what it was, until after 18months, clinically, all the symptoms still pointed to MS and the lesions simply don't show up on a standard MRI (3T magnet). My next MRI's will be with a 3T magnet MRI in another city. The clincher was when my right eye developed locked into a permanent conditoin of optic neuritis and diminished color perception and depth judgement.
So now it's official, I have MS. And now the next post will include a little posting but mostly pictures. Thanks for sharing this journey with me.
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