Guest guest Posted February 26, 2001 Report Share Posted February 26, 2001 Not a silly question at all and I'll answer it as it is right down my alley because this was my mother-in-law's diagnosis. OPCA = Olivopontocerebellar Atrophy. The main symptom is ATAXIA or loss of balance and coordination. See: http://www.ataxia.org Usually this is diagnosed via an MRI and observations are made of loss of cells in the olives, pons and cerebellum (all parts of the brain). There are both hereditary and non-hereditary (sporadic) causes of OPCA. The known hereditary types are now called Spinocerebellar Ataxia types 1 through 14 --> ie. SCA1... SCA2.... SCA14 With the hereditary forms usually you can see a clear pattern of it being passed along in each generation. Gene testing is now available for about a half dozen different forms of SCA. Read more about the hereditary ataxias here: http://www.geneclinics.org/profiles/ataxias/details.html There are numerous causes for sporadic (non-hereditary) OPCA including things like alcoholism, brain tumours, vitamin E deficiency... etc. The connection with OPCA and MSA lies in SOME (about 25%) of the cases of SPORADIC(non-hereditary) OPCA only. There are 3 forms of Multiple System Atrophy (MSA). 1. Shy-Drager Syndrome (SDS) - main symptoms related to autonomic dysfunction 2. Striatonigral Degeneration (SND) - main symptoms similar to Parkinson's disease 3. Sporadic Olivopontocerebellar atrophy (OPCA) - main symptoms are due to cerebellar dysfunction (ataxia) Read more about MSA here: http://www.parkinson.org/atrophy.htm A consensus committee of researchers met in 1996 and again in 1998 to address issues with the names of these disorders. Previously it was believed that SDS, SND and OPCA were all separate diseases. This is not the case as researchers have observed the same abnormality in the brains of patients who died with all three diagnoses. Because of this researchers have lumped them all together under the umbrella term Multiple System Atrophy. What tends to happen is that a patient may first have symptoms from one of the three different types but later on as the disease progresses " Multiple Systems " are affected... thus the name Multiple System Atrophy. If your main symptoms are ataxia only and you do not have any autonomic or parkinson's-like problems then most doctors will hesitate to tell you you have MSA... they will likely only diagnose you with OPCA. Some doctors also have not caught on to the newer terminology so all of these names will likely be in use for many more years to come. I hope this helps... please feel free to ask more questions. Take care, Pam Sanval57@... wrote: > This may sound like a silly question but What is > olivopotocerebellar atrophy or OPCA? Is it another form of shydrager > or something completely different? What are the symptoms? Where do > I go to find out more on this subject? Any info would be appreciated. > Thanks > SAN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2001 Report Share Posted February 26, 2001 Greetings again, Pam! You noted: > ... and you are the resident OPCA expert. Expert?! Ha! Just the resident, vocal OPCA patient! > In some cases it does show up on the scan but the doctor > just isn't experienced enough to read it.. My neuro-opthamologist noted that due to the size (small) and sensitivity (very) of these brain structures, OPCA patients often note symptoms before the MRI shows signs of problems. But yes, that more experienced second opinion is well worth while. A good neurologist knows that and refers patients onto the expert. Far too many don't. My first neurologist was certain it was just anxiety. My second added some additional tests. But noted my eye movements were strange, so referred me along to the n-o, since he did not feel qualified to sort out my visual issues. Even he ran LOTS of detailed tests. Only one set of clinical exams CLEARLY showed the cerebellar dysfunction. > Although she wasn't thrilled with the diagnosis, to her it > was better than not knowing. Amen! And even so, it's not as bad as many possible problems. For example, knowing this isn't some sort of brain tumor does relieve lots of stress. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2001 Report Share Posted March 8, 2001 Greetings Pam! I also responded to Jerry's post, but lost power after a couple hours of working (intermittently) on it. Sigh! As usual, your post is right on target with my own experience. I would like to add a couple of observations (again ... my own experience ... no research). The OPCA form of MSA does disable pretty quickly. It leads to severe problems with balance, coordination, and vision. One little studied problem resulting from OPCA is how the cerebellum helps us deal with confusing environments. Even something as simple as a family gathering (such as at Christmas) is very confusing and overwhelming for me. Too much sound and visual activity. Going to a mall and church is difficult at best for me. I often sit in church with ear plugs. Sounds silly. Yet I can not begin to describe how these settings overwhelm me. (And yes, I do take out the ear plugs for the sermon! ;-) Visual problems can disable pretty quickly. Many days I no longer drive. I no longer even try to drive at night. Not driving is okay. Not able to see to work is not okay. All this occurred during the past three years. Too fast an advancement for my taste! Unlike SDS and SND, there are no medications to help OPCA type symptoms. Finally, researchers and doctors measure advance in terms of time to certain levels of disability and time to death. Since the OPCA form of MSA initially impacts 'non-vital' parts of the brain, it does not usually lead to death as quickly. Anyway, just a couple of thoughts on this. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2001 Report Share Posted March 8, 2001 , I'm probably becoming a pest to those of you who are responding to my inquiries - but here goes another question. You refer to OPCA like symptoms as opposed to SND and SDS symptoms. If Larry's chief complaints are fatigue, balance, OH, and urinary incontinence/urgency (he hasn't discussed impotence or bowel problems with me if he is having those issues), then does tend to put him in the SDS category as opposed OPCA or SND? Thanks, Jerry Re: OPCA & MSA Greetings Pam! I also responded to Jerry's post, but lost power after a couple hours of working (intermittently) on it. Sigh! As usual, your post is right on target with my own experience. I would like to add a couple of observations (again ... my own experience ... no research). The OPCA form of MSA does disable pretty quickly. It leads to severe problems with balance, coordination, and vision. One little studied problem resulting from OPCA is how the cerebellum helps us deal with confusing environments. Even something as simple as a family gathering (such as at Christmas) is very confusing and overwhelming for me. Too much sound and visual activity. Going to a mall and church is difficult at best for me. I often sit in church with ear plugs. Sounds silly. Yet I can not begin to describe how these settings overwhelm me. (And yes, I do take out the ear plugs for the sermon! ;-) Visual problems can disable pretty quickly. Many days I no longer drive. I no longer even try to drive at night. Not driving is okay. Not able to see to work is not okay. All this occurred during the past three years. Too fast an advancement for my taste! Unlike SDS and SND, there are no medications to help OPCA type symptoms. Finally, researchers and doctors measure advance in terms of time to certain levels of disability and time to death. Since the OPCA form of MSA initially impacts 'non-vital' parts of the brain, it does not usually lead to death as quickly. Anyway, just a couple of thoughts on this. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2001 Report Share Posted March 8, 2001 , While the OPCA disables quickly (roughly 1990-1995 for Charlotte) it seems to go on a slower decline after that in our experience. Charlotte was in a wheelchair and had her first speech therapy about then. Of course that is anecdotal and not scientific. However, 1995 was when we also convinced Charlotte to start on exercises. Take care, Bill and Charlotte ======================================================== Fisher wrote: > Greetings Pam! > > I also responded to Jerry's post, but lost power after a couple hours of > working (intermittently) on it. Sigh! > > As usual, your post is right on target with my own experience. I would like > to add a couple of observations (again ... my own experience ... no > research). > > The OPCA form of MSA does disable pretty quickly. It leads to severe > problems with balance, coordination, and vision. > > One little studied problem resulting from OPCA is how the cerebellum helps > us deal with confusing environments. Even something as simple as a family > gathering (such as at Christmas) is very confusing and overwhelming for me. > Too much sound and visual activity. Going to a mall and church is difficult > at best for me. I often sit in church with ear plugs. Sounds silly. Yet I > can not begin to describe how these settings overwhelm me. (And yes, I do > take out the ear plugs for the sermon! ;-) > > Visual problems can disable pretty quickly. Many days I no longer drive. I > no longer even try to drive at night. Not driving is okay. Not able to see > to work is not okay. > > All this occurred during the past three years. Too fast an advancement for > my taste! Unlike SDS and SND, there are no medications to help OPCA type > symptoms. > > Finally, researchers and doctors measure advance in terms of time to certain > levels of disability and time to death. Since the OPCA form of MSA > initially impacts 'non-vital' parts of the brain, it does not usually lead > to death as quickly. > > Anyway, just a couple of thoughts on this. > > Regards, > =jbf= > > B. Fisher > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2001 Report Share Posted March 8, 2001 , While the OPCA disables quickly (roughly 1990-1995 for Charlotte) it seems to go on a slower decline after that in our experience. Charlotte was in a wheelchair and had her first speech therapy about then. Of course that is anecdotal and not scientific. However, 1995 was when we also convinced Charlotte to start on exercises. Take care, Bill and Charlotte ======================================================== Fisher wrote: > Greetings Pam! > > I also responded to Jerry's post, but lost power after a couple hours of > working (intermittently) on it. Sigh! > > As usual, your post is right on target with my own experience. I would like > to add a couple of observations (again ... my own experience ... no > research). > > The OPCA form of MSA does disable pretty quickly. It leads to severe > problems with balance, coordination, and vision. > > One little studied problem resulting from OPCA is how the cerebellum helps > us deal with confusing environments. Even something as simple as a family > gathering (such as at Christmas) is very confusing and overwhelming for me. > Too much sound and visual activity. Going to a mall and church is difficult > at best for me. I often sit in church with ear plugs. Sounds silly. Yet I > can not begin to describe how these settings overwhelm me. (And yes, I do > take out the ear plugs for the sermon! ;-) > > Visual problems can disable pretty quickly. Many days I no longer drive. I > no longer even try to drive at night. Not driving is okay. Not able to see > to work is not okay. > > All this occurred during the past three years. Too fast an advancement for > my taste! Unlike SDS and SND, there are no medications to help OPCA type > symptoms. > > Finally, researchers and doctors measure advance in terms of time to certain > levels of disability and time to death. Since the OPCA form of MSA > initially impacts 'non-vital' parts of the brain, it does not usually lead > to death as quickly. > > Anyway, just a couple of thoughts on this. > > Regards, > =jbf= > > B. Fisher > > Quote Link to comment Share on other sites More sharing options...
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