Friday, December 16, 2011

My condition

I found some helpful hints on how to blog on this site.   Thought I would share it with you.

Some of you may be wondering how it is that I can sit here at my computer at all different hours of the day, seven days a week. I have an undiagnosed condition which makes working, not only difficult, but downright dangerous to myself and those around me.

It is a strange condition, which the neurologists believe is psychiatric and psychiatrists believe is neurological. I lose control of my arms and legs, though I still feel everything. Eventually, the control returns and I can resume regular activities, after I have rested from the exhaustion. Sometimes, I become confused right before an episode, sometimes during, and sometimes after. However, the confusion may not appear at all. Sometimes, I only lose control of my legs. Sometimes, I only lose control of my arms. Sometimes, it lasts only for a few minutes. Other times it lasts for eight to ten hours. The only thing dependable about it, is it will happen and it will be unexpected when it does.

I have been through many tests to see if there is a physical reason for this condition. One was a Methylmalonic Acid test. This test is for early and/or mild vitamin b12 deficiency especially at the tissue level; to help diagnose methylmalonic acidemia, a rare inherited metabolic disorder.
One was CPK. This test determines if there is muscle damage, to the heart or otherwise. ONe was TSH to see if it was a thyroid disorder. Another was a plain old CBC which is standard for nearly any sickness. A complete cell count in your blood. One was ANA or antinuclear antibody. This is a test for autoimmune disorders. One was HDL or high density lipoprotein. This is a cholesterol test. One was NMO Antibody test. I cannot find what this test is. One was the test for lyme disease antibody.

These are not all of the tests I underwent. I had neurological tests as well. One test was in my room and in my bed where they hooked wires to my brain. I don't remember hearing anything or if my eyes were open. They took me to a room, hooked more wires on my head, and gave me a test sitting up and focusing on a little box. The other test was laying down with headphones on.

The initial results: We cannot find anything physically wrong with you. We have seen cases like this before which were psychological. We recommend you see a psychiatrist.

I went to the nearest counseling center. They are trying to see if they could be of any help to me at all, while recommending that I see a neurologist.

My regular doctor has given up. There is nothing more that he can to do to help my condition. We have been through everything he can think of, I suppose. I have tried to make sure that my doctor gets all the records from all these different places. I trust my doctor. I trust his judgment.

I have no idea what to do next or where to go. However, I have been denied social security disability because my condition does not preclude me from working.

I walk into a room and the first thing I notice is the danger present. Let's pick the safest room one would normally think of. A nursery. I mean how dangerous could a nursery be, right? Have you looked at the sides of the crib? Have you looked at the edges of the dresser? How strong are these items? Will they get hit and move out of the way or be crushed under a hundred and fifty pounds of dead weight? If they are crushed will they splinter? Will small pieces come off of them and be driven into my body if I fell on them? What about the rocking chair? It seems harmless enough...
However, have you ever thought of a hundred and fifty pounds of weight falling and the pressure that would create on someone's head as it crashes into the seat? or the armrest? What about the end of the rocker arm? Let's move on to the window. Nearly every room has a window. The nursery is for children when they start walking, so we are on the ground floor. We have no furniture near the window so the child will not accidentally fall out while climbing on it. If someone were walking toward it and lost the ability to control their arms and legs, their head would be the first thing to hit the window and break the glass.

Now take those same thoughts and go into the living room and kitchen, the bathroom and bedroom. I have no where I can go and be safe. Even if all the furniture were taken out of every room, you cannot remove the floor. We know from experience as a child that when you hit the floor and your head bangs on it, it can cause a bruise and a bump. At five foot, it can cause possible death.

You may be wondering how I got the courage to write about it. I was reading some of the hubpages. I found someone who was going through the same thing I am going through. Here is the link if you want it:

You will have to copy and paste, I think. It does not appear to be a link that you can click on...

She has written several hubs on the subject. I hope that she will continue to let us know what she finds out about her condition. I am curious to see who gets their diagnosis first, her or me.

No comments:

Post a Comment