Because of my having switched from Dr C to Dr B (aka Li) I did not pursue the issue of TLE any further at the time I wrote those blog entries back in April. However, recent comments here have recalled the issue to me, and reawakened my interest in finding out just what is going on — though that may take some time as I am still up in the air about whether or not I will stay with Li or try to find a female psychiatrist after all. Li has been on vacation these past three weeks, so I cannot truly say anything, but I must say that absence has not made me grow any fonder of seeing him! In fact, it has only solidified my distrust and dislike, which was more or less lying low and trying to give him the benefit of the doubt for the time being…Following whagt Dr O urged me to do, that is.
Be that as it may, it just might behoove me to take the proverbial bull by the horns and present Li with these pages, the two TLE posts and see how he reacts, see if he can or will help me pursue the ideas contained in them, objectively, not jumping to conclusions immediately but in a let’s take it slow and wait and see mode..My fear is that either he will jump on one bandwagon or another, not truly thinking about me or about the consequences of his easily accepting either diagnosis.
I was struck again though with several symptoms I have had for a long time, that were emphasized in the “Seized” book by Eva Laplante. First of all, chronic paranoia as a neuropsychiatric presentation, personality changes too, with sudden outrageous impulses (they specifically mention stripping naked and running outside!) and then, strikingly, those signal hyperintensities seen on the brain MRI scan. All this with relatively healthy “inter-episode” status…There, though, I can’t really say, as for years I was NOT healthy between bouts. In fact, I was almost constantly in the hospital, though perhaps even there I had my good times and bad, with the ups being times of good functioning.
One of my commenters, E, mentioned the difficulties he felt he would face “giving up the identity of someone with mental illness.” Yes, indeed. While I have in fact never FELT that I had schizophrenia or mental illness, always mentally resisted accepting that diagnosis, or any but the infectious disease etiology of Lyme disease, I would have trouble dealing with the fact that I could no longer speak for my “siblings in the struggle” of schizophrenia not if officially i did not belong in their “category” any longer! Forget the weird fact that my symptoms so strikingly resembled theirs, and that they felt I told their story! Forget that they all felt I had helped them immensely. It would all go for naught, because I would no longer be credible as “a schizophrenic”. Now personally it is a small price to pay, as I never felt I was schizophrenic to begin with, though I would not like to have my books become something of a farce…But I would indeed feel bad for those I wanted to help with all my writings. Who would I speak for if not them? And I would have lost my community, so to speak!
However, I do not think the issue will be that easily resolved, not unless I have one of those deep EEGs and it is positive…But I doubt it would be, even if I could have one. They don’t do them here, only in New Haven, and even then I am not certain how definitive the results are: if you do not show abnormalities does that completely rule out TLE or only indicate a negative showing at that time? I did have two EEGs separated by years, both time while I was on anticonvulsants, and neither one showed any seizure activity, but I have been told that regular EEGs often do not indicate TLE anyway. So I am not sure how they would determine TLE for certain versus schizophrenia, except by a preponderance of opinions of various docs. Well, so far, not a one has actually diagnosed it or even gone as far as to suggest the diagnosis. All Dr C said was that I had TLE insofar as I had olfactory hallucinations, but he said nothing whatsoever about my schizophrenia…Maybe he would have, but I got paranoid about him and left before I had a chance to find out.
I wanted to go back to that APRN, because I did like her and thought I would be comfortable with her. But I didn’t think she would be up on TLE when I met her, and that was what made me NOT go with her in the first place. Aaah, this is what made me want to see a doc in the first place, and I must remember my goal. I want to find out about this, get it over with, or under my belt or whatever the proper expression is. I want to find out from someone who knows, what the possibilities are…Maybe I ought to start with a neurologist, and skip the psychiatrist altogether? I never thought of that. Perhaps that is the way to go, but the thing is I do not like anyone in the group that dominate the local hospital…And I do not know anywhere else I can see anyone…Nor who would in fact be good. I cannot bear to see someone cold or uncaring, or incompetent! But how to find someone I could both trust to be, well, someone I trust and someone who is bright enough and interested enough to get to the bottom of things?
I found this very interesting article in iGoogle for scholarly articles: http://neuro.psychiatryonline.org/cgi/reprint/9/2/293-a.pdf
If it opens properly it should bring you to an informative article on TLE and psychosis and psychiatric disorders “ictal and non-ictal,” which means, for those of you who don’t know the word, psychiatric disorders seen with the seizure and outside of the seizure.