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Date Posted: 06:36:15 07/30/00 Sun
Author: Cheryl O'Brien
Subject: Re: Cheryl's Letter of introduction
In reply to: Cheryl O'Brien 's message, "Cheryl's Letter of introduction" on 15:50:31 07/25/00 Tue

I read Bev's letter of introduction and it prompted me to write more of what I've been through.

My poor health started nearly 15 years ago. I came down with chronic mononucleosis that last 6 months. I literally slept 20 hours a day, up two hours in the a.m. and two in the p.m. I never fully recovered from it. For years I suffered debilitating fatigue, recurring fevers and sore throats, muscle aches and pains, and the like. I just never felt well, and my stamina was extremely poor. After 7 or 8 years, the flu-like symptoms started waning and the neurological started waxing. The fatigue, however, has stayed with me all along, though I am able to make it through a work day (barely) with no energy left over. I have to take a 3-5 hour nap on the weekends to make it through the week.

As I said earlier, I get tingles a lot. I remember when I was in my early twenties if I looked down I would feel electrical sensations going down my neck and back. This was before the chronic fatigue syndrome (CFS) that evolved from the 1986 bout of mono.

When symptoms flare up, I get oscillopia (where I look at stationary objects and they appear to be moving), I get migarine "auras" (but seldom migraines any more) where there are visual disturbances (not exactly sparks or geometric shapes, but more times a circular area in my visual field that "jingles and jangles" when I blink my eyes. I don't know how else to describe it).

If I do get migraines, I tend to wake up with them. They seem to start with a very stiff/inflammed neck muscle and progress from there. Sometimes it feels like my brain is inflammed.

I have even had several "visions." These were even more disturbing than the other symptoms. In November 1997, I was on my way to work. I passed a large water fountain and there appeared to be flames emanating from it. I blinked and looked again, and it was still there. I looked around to see if anyone else was noticing this. This was in downtown Los Angeles, and I thought it must be part of a movie being filmed. No one appeared to notice it. I shook my head to clear it, and looked a third time, and the flames were gone. Oh my! (By the way, I have never done street drugs, so that rules out that this was some sort of flashback or recurrence of some drug.) The next day, it was there again. Then I never saw it again.

Another "vision" I had was when I was driving on the freeway. I saw what appeared to be a 7-ft. tall man-shaped figure (it had a head, arms and legs, but looked like it was made out of a dark-colored smokey substance) running across the freeway, through the cars. It sort of had a look like an escaped 'toon from Roger Rabbit. I laughed because it looked so funny. Then I stopped laughing realizing what it meant. I e-mailed my neuro that day about it, because it really shook me up to be seeing things. Of course, as I had come to expect, the neuro did nothing and said nothing. When I saw him, I, of course, raised the issue, but got no answer. I fired him. I mean let's face it: I had numerous MRIs, persistent abnormalities with demyelination, symptoms galore, and he can't make a diagnosis of anything! The last thing he said was he thought I might be tending toward arteriosclerosis.

So I moved from L.A. to Virginia, and my first MRI here, the radiologist (not the neuro) is suspicious of MS. He called me as soon as he got the report, wanted me in his office the next day. So I think, Finally! I go in. He says he wants to wait and re-do the MRI in 6 months for comparison purposes. I said why not get all the MRI films from my last several neuros. I have him my last neuro's card. Did he have me fill out and sign a request to get my medical records? Nooooooo! So I sent one to my last neuro. New neuro is going to get them, whether he wants them or not.

Other problems have been cognitive impairment. I have had several bouts with forgetting how to do simple arithmetic. I intended to multiply some numbers, but ended up with a sum instead of a product. And I couldn't understand what the problem was. I have had moments where I just go blank on doing simple tasks, like transferring a telephone call. More and more frequently, when people speak to me, their words do not convey meaning. I read now and either I don't understand what I just read, or I forget that quickly. Short term memory also is under attack. It seems like I have a black hole in my memory that is getting bigger.

This could go on, but I think I've covered the major issues. Scary isn't it? And I'm still walking around, driving a car, and working. Though I know that if I didn't push myself so much to work, my quality of life would be so much better because I wouldn't be so fatigued and constantly precipitating and exacerbating the flare-ups.

But what can you do when you can't get a diagnosis?

MRI's have shown "high focal points of demyelination of unknown etiology," though several doctors have suspected it might be MS (specifically my neuro who did the first MRI, and the one I had last month).

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