I have posted a couple of times and had some kind advice, I know some of the pain is from the anger at exhusband and other things even further back, and I'm okay with that, if it was only that I think I could eventually come to terms. But I haven't mentioned the elephant my room and now I must,even if no-one replies I will have voiced my fears (actually it's more than fear, way beyond). Here goes...
Six and a half years ago I had to have a brain mri for a painful lump on my forehead which was turned out to be a harmless cyst, easily removed. Unfortunately an incidental finding on the scan was "marked frontal lobe atrophy - does the patient have symptoms?". This freaked me out and I insisted on discussing it with a neurologist. He explained the possible implications and said he had never seen a brain scan like mine where the person had no symptoms. Frontal lobe dementia is worse than Alzheimer's and it is progressive with no treatment at all. After talking to me at length and giving me various tests to perform he concluded that I was functioning normally, infact he said at a very high level. Also, as I had been premature and not expected to survive it could be that my brain had not fully developed but had compensated in other ways. He could not and would not predict the future or speculate on the significance of this finding. He offered to repeat the scan in a couple of years to see if it deteriorated further. I refused because I did not want to know.
Fast forward six years. No major change in social, emotional or cognitive functions. But I've never forgotten it. It's like having a timebomb in my head. I had looked after my mum with vascular dementia but her personality never really changed, she was always a sweetie and became even more so - but she always had me and trusted me implicitly.
Three weeks ago I read Sarno, then Steve's book which somehow pulled it all together. I liked his JUST DO IT motto and adopted it and felt for a week or two I was making progress. Last week my gp wanted me to see a neurologist about my twitchy leg and quad atrophy. ALS was ruled out couple of years ago. That had also freaked me out at the when a gp had suggested it. Anyway, nice young man agreed something wrong, looked at back mri but nothing there to cause the symptons so suggested other Neuro tests. I said I would not have another brain scan and explained why. What did he do - pulled up the previous one and examined it, pointing out the atrophy that I have spent six years trying to forget. He said it was much more than would be expected for my age. He also pointed out the abnormally wide gap between my left and right frontal lobes. Great. Well since the everytime I close my eyes I see that image on the screen and my pain has ramped up. Until then I thought I was doing quite well but actally I'm in a pit of pain, dread and fear for the future.
My friends and sister say things like "don't worry, you may always have been like it" or "we might all get dementia". I know this is true but the odds are not exactly stacked in my favour. How can I "unknow" this. I am absolutely convinced this has made my back worse because its not my annular tear anymore. I feel so ill and awful and I am sorry this post has been so long but at least it's out and I have proved to myself that I can still string two words together.
Paddipaws
Six and a half years ago I had to have a brain mri for a painful lump on my forehead which was turned out to be a harmless cyst, easily removed. Unfortunately an incidental finding on the scan was "marked frontal lobe atrophy - does the patient have symptoms?". This freaked me out and I insisted on discussing it with a neurologist. He explained the possible implications and said he had never seen a brain scan like mine where the person had no symptoms. Frontal lobe dementia is worse than Alzheimer's and it is progressive with no treatment at all. After talking to me at length and giving me various tests to perform he concluded that I was functioning normally, infact he said at a very high level. Also, as I had been premature and not expected to survive it could be that my brain had not fully developed but had compensated in other ways. He could not and would not predict the future or speculate on the significance of this finding. He offered to repeat the scan in a couple of years to see if it deteriorated further. I refused because I did not want to know.
Fast forward six years. No major change in social, emotional or cognitive functions. But I've never forgotten it. It's like having a timebomb in my head. I had looked after my mum with vascular dementia but her personality never really changed, she was always a sweetie and became even more so - but she always had me and trusted me implicitly.
Three weeks ago I read Sarno, then Steve's book which somehow pulled it all together. I liked his JUST DO IT motto and adopted it and felt for a week or two I was making progress. Last week my gp wanted me to see a neurologist about my twitchy leg and quad atrophy. ALS was ruled out couple of years ago. That had also freaked me out at the when a gp had suggested it. Anyway, nice young man agreed something wrong, looked at back mri but nothing there to cause the symptons so suggested other Neuro tests. I said I would not have another brain scan and explained why. What did he do - pulled up the previous one and examined it, pointing out the atrophy that I have spent six years trying to forget. He said it was much more than would be expected for my age. He also pointed out the abnormally wide gap between my left and right frontal lobes. Great. Well since the everytime I close my eyes I see that image on the screen and my pain has ramped up. Until then I thought I was doing quite well but actally I'm in a pit of pain, dread and fear for the future.
My friends and sister say things like "don't worry, you may always have been like it" or "we might all get dementia". I know this is true but the odds are not exactly stacked in my favour. How can I "unknow" this. I am absolutely convinced this has made my back worse because its not my annular tear anymore. I feel so ill and awful and I am sorry this post has been so long but at least it's out and I have proved to myself that I can still string two words together.
Paddipaws
