I'm disgusted

Re: I'm disgusted

Submitted by jbarry315 on Fri, 2007-03-02 - 04:24

It's easy to become a little disheartened with what is provided by those who are in charge of the technology and the experience necessary to make a good diagnosis. What comes from them is, at best, second-hand understanding of the problem, while what you experience is first-hand. It isn't so much the ineptitude of the professionals or their lack of focus upon the problem as it is the inexact nature of what testing reveals. Some "normal" people have "abnormal" electrical activity shown on an EEG; but, their synapses don't allow for the breakdown of electrical pathways like someone with a seizure disorder experiences. If what's shown on an EEG is inconclusive, there's not much that can be done about it. It DOES matter, however, WHO is interpreting what's seen on that EEG. If what is described by you and someone observing you on a regular basis to the doctor can be located on the EEG, then an abnormality which might go unnoticed can lead the doctor to another set of questions which, when answered, would pinpoint that area of the brain in which a seizure is prone to originate--- and that can be found on the EEG like reading a roadmap. Once the pattern is located, and its shape identified, then it can be followed through the EEG everywhere it occurs--- and can be seen to spread. Lacking that, the scribbles on the page look to the technician and the doctor a lot like they might look to anyone else... If a brain injury or inherited physical brain abnormality was present, a CAT scan or MRI would see it; but, if what's there and causing a problem is hidden from view, then these tests also will be of little use. That leads back to the EEG, and the doctor's questioning. It's a difficult thing to articulate without sounding a little unfair, but the fact is that some doctors are better at doing this than others. I know that I had been to a number of doctors before I met with the ONE man that knew what he was looking for, and found it; and, the testing he did of me included more than an EEG. Some of it seemed a little odd; and, a lot of what I perceived to be the right answer to his questions was contradicted by my better half. It appears that I did, unbeknown to me, tend to walk sideways; and, I had a problem with my coordination and balance. I had adjusted to this, and did not know it existed. I had come to think I had one leg a little longer than the other. The truth of the matter allowed the doctor to proceed with a simple test for me that led him to an understanding of what was going on. With that knowledge, it was just a matter of seconds before he found, on the EEG, the pattern of abnormal activity--- which repeated itself again and again there in black and white within the pages... If your episodes have been observed by someone else, they need to go with you to the doctor and describe what they see. In such an instance, you are not as able to relate the pertinent information as they are--- You simply cannot see yourself and notice all that they can. They can also relate to the doctor some facts that you may not take notice of; like, how much you'd had to eat prior to the seizure, and what it was you ate. The amount of physical exertion you had been putting forth before the seizure they are more able to relate also; and, what your stress level had been, and what had been going on in your life. All of this has a bearing on the right diagnosis. A good neurologist knows to look at these things. Just don't let the lack of anything concrete in one diagnostic test get the best of your spirits. I think we've all been there; and, as far as suffering from the effects of the disorder or the medications, the doctor hasn't... Hope it helps... jb You kind've hadda be there--- and all of us were, regardless of who doesn't understand. We, it appears, know something they don't; and, we're stronger for it...