PatientsLikeMe ™

Mysterious symptoms have plagued me for nearly 30 years, ever since my son's birth in 1977. Since the first symptom of unequal pupils & severe headaches no one could explain, clumsiness, unbalanced walking, & miscellaneous sensory issues but I was told it was just stress. The first time I really took notice of a major symptom was the numb (6" square) spot over my right knee. It just went dead one day & simply numb, like it'd frozen. This was '95. Telling my doctors only got me befuddled looks of pity.

My eyes acted up (I didn't know it was Optic Neuritis back then) & the numb spot persisted while more symptoms started piling up like the imbalances, dizzy spells, bladder/bowel problems, RLS, but because I'm a Type A person, no one took them serious. Everyone thought I was my own problem. Then in 2001, my legs were suddenly weak. In 1998, I could climb the Charlotte Motor Speedway grandstands without being winded or overstressed; now suddenly I thought I'd have a heart attack & my legs were jelly! But because of my hypothyroidism & a significant weight gain (40 #), that was the new excuse.

In the meantime, bladder issues set in & my legs got worst. Getting up & moving after a movie required assistance with my husband, or I could fall as my legs simply didn't respond. Then in July 2006, I spray painted some furniture one morning before school & my right hand lost fine motor control & kept having tremors. I had an appt with my PCP that day & she noticed I couldn't use a pen to make a note... she asked me some questions & then said she thinks a neuro is in order, & suspected MS immediately. It didn't surprise me as I'd suspected it back in '95 but no one else agreed then. It was too dramatic a thought. "No one just has MS".

So off I go to a highly respected neuro here in town. He checks me out completely & assures me I don't have a brain tumor, which is what I was the most scared of. He declares that if he were to diagnose me there and then, he'd say I have MS but we have to do MRI's etc...long story short, the MRI's come back normal, all labs deny any other things like Lyme, diabetes, etc.. the VEP's are good, etc.. so now he's a little baffled cos he's just sure (and he really isn't wrong very often).  So he does a nerve conduction test & my leg nerves are smaller than they should be for a woman my age & size, like that of a diabetic but I'm not diabetic. So we monitor.

We recheck up & I'm getting new symptoms & giving him a littany of stuff when we meet. I have numb spots all over - right knee, feet, fingertips, arm, upper right quadrant of my face etc... & suddenly one big new one in March '08... Optic Neuritis of the right eye. It was in full blown action the day we were meeting AND I was in one foul mood about all the inconclusiveness. The pupils wouldn't react together or properly, so he closely examines the nerve inside the right eye & sits back to say, "Damn if you don't have MS." I say, "Well that's what you thought from the beginning, so let's get on with it!" He reorders MRI's of everything... still no lesions. But now, I really flunk my balance walk and more reactions are different.

Clinically he dx'd MS. We decide to do an LP which triggered a nightmare of reactions & I guess I leaked so the headache was murderous but finally sealed & settled 10 days later. The LP is negative. But now spasticity, the ON, the tremors, pruritis, stagger walking, & major sensory pain all over like cattle prods of electric shocks has become my major theater of symptoms. In October, my neuro started me on Copaxone. Update Dec '09: Copaxone flunked out in March after 6 months and horrible skin reactions no matter what I tried... and two hospital stays for heart issues that ended up being "the Ms Hug"... have felt better without it.

In the meantime, I want to learn all I can so I can live gracefully with this disease. I've always been of the mindset that I want to know what's going on so I can work with it & not be shocked when something flattens me later on down the road. I've read several books already & I'm exploring exercise... I've begun a heavy supplement regimen that seems to be helping in many ways. Fortunately I'm married to a very committed and loving man because I might as well be a paraplegic of a wife for him. About 2 yrs ago, I noticed I was sexually dysfunctional & that shocked me but now I've read enough to learn that it's not uncommon. I would just like to figure out some solutions to help that area.

When my health isn't consuming my thoughts I'm watching or writing about racing, working full time outside sales, raising German Shepherds and trying to keep up with the things I enjoy like web-building, puzzles and my gardens.

Since all this began, I had been on Mirapex and begun to experience their nasty little side effect of sudden sleep episodes without warning. My neuro dropped the ball completely on this, blamed my heart and racked up cardio expenses. When I dx’d myself, I left my neuro and found a new one who’s been fabulous!

Now, I’m dealing with autonomic dysfunctions: frozen right vocal chord, stopped breathing without warning & swallowing issues causing silent aspiration. The new neuro has run the MRI’s and blood work and my O-bands are showing now several times. I’ve entered into a study for a new oral medication for MS. Hopefully this will help.

A bit of my life in pictures:

Clockwise from the top: My Wedding day, my Lord, Homer Alaska, my husband and son with their King Salmon catch in Kasilof Alaska, my friend and his son's sprint cars, a purple rose- my fave, Jody Bergsma my favorite artist, Dale Earnhardt and Kevin Harvick - my drivers, and below Kevin Harvick, the crossed Checkered Flags of Another Viewpoint, my editorial column for NASCAR Writing.

All 8 cats that live with us.  Lots of furry love to go around!

Our wedding day in an old historical church... a very beautiful day all together. What a long strange journey!