Guest guest Posted November 20, 2002 Report Share Posted November 20, 2002 I thought I was really on top of things, until I found this site. I had searched almost all the MSA web pages I could find. They all said pretty much the same thing.. This.. and This.. and This.. Since joining here I have learned so much more. So MANY things that are not listed as symptoms, but now appear to be so.. Peace and Love.. learning so much > > Hi everyone, > I have been reading just about all of the posts just about every day > since joining the group. I have not been posting though because I have > really been concentrating on the reading. I have learned heaps about > what to expect of this disease already, and I know there is much more > to learn. My husband Reg was given a definate diagnosis of MSA in > September, three years after being diagnosed with PD. We are still > really trying to come to terms with it. I have only been a member of > the group for a week or so, and have already been reading about things > which affect Reg, and which we did not realise was part of the > disease, such as his cold feet! They get as cold as ice, as do his > knees,but not his hands. I have to say though, that compared to the > suffering that many members of this group are experiencing, Reg is as > yet, only mildly affected. I do know this will change as time goes by, > but I feel a little more confident being a part of this group, with > all of these courageous people, sufferers and carers alike. > Robyn. > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 Greetings! You mentioned: > I thought I was really on top of things, until I found this site. > : : > So MANY things that are not listed as symptoms, but now appear to be so.. Actually, most of this is just a logical progression of problems with three basic areas, though other areas of the brain are involved to a lesser extent. These three problems include decreased Dopamine production (accounting for the Parkinsons Plus symptoms), autonomic nervous system control, and decreased effectiveness of the cerebellum. The Parkinsons Plus set of symptoms are similar to the Parkinsons Disease symptoms. However, it might not include as many problems with tremor. Unfortunately, it is different, as can be seen by the ineffectiveness of medications to control the symptoms. The medications help, but not as much as with Parkinsons Disease. Problems with the autonomic nervous systems can cause problems with eyes (width of the opening of pupil, rate of blinking, ability to focus, etc), breathing ('forgetting' to breathe when needed, or unusual obstruction of the airway, during night as well), swallowing (no longer able to swallow safely, leading to aspiration pneumonia), heart (inability to properly regulate blood flow based on exercise, and other problems), digestion (problems with moving along food ... talk about an automatic process!), and blood pressure can fall very, no dangerously low. The decreased ineffectiveness of the cerebellum - often called Sporadic OlivoPontoCerebellar Atrophy (or just Sporadic OPCA) - causes problems with swallowing, talking, control of eye movements, binocular vision, intentional tremors (tremor when intentionally moving), etc. Outside of swallowing problems, most of these symptoms seem fairly mild in comparison. But, PLEASE, don't freak! The range of symptoms does seem daunting. But generally new symptoms only present themselves one or two at a time. A sudden change often indicates infection, or some other sudden increase in stress (such as very bad sleep, or travel, or ...). For example, a couple years ago, we had a tree fall on our house. Insurance covered it. Problem for me when it hit, I suddenly collapsed to the ground, with very thick tongue, LOTS of tremors, etc. But after some rest, I had none of those symptoms. It was an eye opener for me. They are there now, but it took a couple years for those symptoms to completely emerge as common. Hope that helps explain why it seems so complex. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 : Thanks for such a concise overview of this terrible disease process. Well done! Message: 4 Date: Thu, 21 Nov 2002 10:48:46 -0500 Subject: Re: learning so much Greetings! You mentioned: > I thought I was really on top of things, until I found this site. > : : > So MANY things that are not listed as symptoms, but now appear to be so.. Actually, most of this is just a logical progression of problems with three basic areas, though other areas of the brain are involved to a lesser extent. These three problems include decreased Dopamine production (accounting for the Parkinsons Plus symptoms), autonomic nervous system control, and decreased effectiveness of the cerebellum. The Parkinsons Plus set of symptoms are similar to the Parkinsons Disease symptoms. However, it might not include as many problems with tremor. Unfortunately, it is different, as can be seen by the ineffectiveness of medications to control the symptoms. The medications help, but not as much as with Parkinsons Disease. Problems with the autonomic nervous systems can cause problems with eyes (width of the opening of pupil, rate of blinking, ability to focus, etc), breathing ('forgetting' to breathe when needed, or unusual obstruction of the airway, during night as well), swallowing (no longer able to swallow safely, leading to aspiration pneumonia), heart (inability to properly regulate blood flow based on exercise, and other problems), digestion (problems with moving along food ... talk about an automatic process!), and blood pressure can fall very, no dangerously low. The decreased ineffectiveness of the cerebellum - often called Sporadic OlivoPontoCerebellar Atrophy (or just Sporadic OPCA) - causes problems with swallowing, talking, control of eye movements, binocular vision, intentional tremors (tremor when intentionally moving), etc. Outside of swallowing problems, most of these symptoms seem fairly mild in comparison. But, PLEASE, don't freak! The range of symptoms does seem daunting. But generally new symptoms only present themselves one or two at a time. A sudden change often indicates infection, or some other sudden increase in stress (such as very bad sleep, or travel, or ...). For example, a couple years ago, we had a tree fall on our house. Insurance covered it. Problem for me when it hit, I suddenly collapsed to the ground, with very thick tongue, LOTS of tremors, etc. But after some rest, I had none of those symptoms. It was an eye opener for me. They are there now, but it took a couple years for those symptoms to completely emerge as common. Hope that helps explain why it seems so complex. Regards, =jbf= B. Fisher Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
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