Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 MJH What I described is my function NOW. Last winter before CPAP/FFC I was in a near vegetative state, making meals, doing laundry and sweeping with a broom were my limit. TV was even too much stimuli for my ability to cope. I'm glad not to be there but it's not so distant that I don't remember with fear. And there are still some days that are better than others. The medical term is interesting. For all your scrambled brain, you have a lot of stored info that you are able to pass on. I respect that. I read and read and don't seem to retain much or make the connections that I know I should be able to make. With the deficits you describe, imagine what a powerful mind you'd have without the scrambling! You'd be scary!!! LOL Diane Re: Symptoms of Autism which may be relevant to CFS/ME Diane Actually, Scrambled Brain Syndrome does have another name. A couple or three years ago I met for ten minutes with Crofford, MD, a researcher then at the U of MI, who acknowledged this symptom and said it was more commonly known as a Disregulation of the Executive Function of the brain. She told me I was neither crazy nor going crazy. I knew that, but it was good to have my assessment professionally validated. Before we could continue our relationship and unscramble my brain, my kid got even sicker and Crofford left the U of MI for KY..... and, it had taken about a year of persistence to get an appointment with her. What you describe below would be high functioning for me. 16 years. mjh " The Basil Book " _http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/) Today was a good example of how much my cognitive ability has suffered, I can no longer even begin to consider multitasking. I grieve that loss. I used to do so well at it. I can't remember what I'm doing off the main path, on some rabbit trail, nor where I was going or for what purpose. I seem to leave more loose ends than I am able to keep track of and Those loose ends many times unravel into a disastrously tiring, disorganized and nonproductive day. On the better days it's just very strenuous to keep the thoughts organized enough to get things finished. Today was such a day. I managed to finish what needed to be done, but it's taken the full day to do what should have taken the morning to accomplish. The half full approach to all of that...at least I am upright much of the day, I am able to choose when I can take a rest, I can think rational thoughts and process more information than I could last winter. I will not allow myself to grieve the losses. I am thankful for what has been gained. Diane in MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 Some of this could be due to poor brain perfusion, and I find hyperbaric oxygen helps that. I have trouble with crowds now, and hyperacussis where sounds are concerned (they sound too loud and " hurt " at times), and with overstimulation. But I also usually feel my body is buzzy, and I feel irritable, low level irritable much of the time. I know this to be due to the lyme/babesia infection since the symptoms were congruent with the tickbite. So whatever the downstream reasons (toxins, encephalitis, the bugs themselves, or alterations in our own pathways) this is treatable, I believe, if one treats the infections. WHen I was on amoxicillin for my tooth, the buzzing went away, it was great to just lie in bed feeling 'normal'. My neck became more mobile too. My response was immediate, ie my lyme is sensitive to amoxicillin, but I just can't tolerate those high doses for the length of time required which is months or years. > > MJH > What I described is my function NOW. Last winter before CPAP/FFC I was in a near vegetative state, making meals, doing laundry and sweeping with a broom were my limit. TV was even too much stimuli for my ability to cope. I'm glad not to be there but it's not so distant that I don't remember with fear. And there are still some days that are better than others. > > The medical term is interesting. For all your scrambled brain, you have a lot of stored info that you are able to pass on. I respect that. I read and read and don't seem to retain much or make the connections that I know I should be able to make. With the deficits you describe, imagine what a powerful mind you'd have without the scrambling! You'd be scary!!! LOL > Diane > > Re: Symptoms of Autism which may be relevant to CFS/ME > > > Diane > > Actually, Scrambled Brain Syndrome does have another name. > > A couple or three years ago I met for ten minutes with Crofford, MD, > a researcher then at the U of MI, who acknowledged this symptom and said it > was more commonly known as a Disregulation of the Executive Function of the > brain. She told me I was neither crazy nor going crazy. I knew that, but it > was good to have my assessment professionally validated. > > Before we could continue our relationship and unscramble my brain, my kid > got even sicker and Crofford left the U of MI for KY..... and, it had taken > about a year of persistence to get an appointment with her. > > What you describe below would be high functioning for me. 16 years. > > mjh > " The Basil Book " > _http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/) > > > Today was a good example of > how much my cognitive ability has suffered, I can no longer even begin to > consider multitasking. I grieve that loss. I used to do so well at it. I can't > remember what I'm doing off the main path, on some rabbit trail, nor where I > was going or for what purpose. I seem to leave more loose ends than I am able > to keep track of and Those loose ends many times unravel into a disastrously > tiring, disorganized and nonproductive day. On the better days it's just very > strenuous to keep the thoughts organized enough to get things finished. Today > was such a day. I managed to finish what needed to be done, but it's taken > the full day to do what should have taken the morning to accomplish. The half > full approach to all of that...at least I am upright much of the day, I am > able to choose when I can take a rest, I can think rational thoughts and > process more information than I could last winter. I will not allow myself to > grieve the losses. I am thankful for what has been gained. > Diane in MI > > Quote Link to comment Share on other sites More sharing options...
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