Guest guest Posted November 19, 2000 Report Share Posted November 19, 2000 Pleas explain: 1. Pure autonomic dysfunction 2. Extrapyramidal or cerebellar deficits Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2000 Report Share Posted November 20, 2000 Hi Barb, Were you able to figure out what these things mean from the stuff I posted yesterday? Autonomic dysfunction is essentially orthostatic hypotension and bladder problems. Extrapyramidal deficits lead to Parkinson's-like symptoms. Cerebellar deficits lead to ataxia and balance symptoms. For a diagnosis of " probable MSA " you need to show autonomic + cerebellar OR autonomic + extrapyramidal OR autonomic + cerebellar + extrapyramidal I posted some new research the other day by Dr. Kaufmann that talked about the possibility that Pure Autonomic Failure, MSA and Parkinson's are all variations of the same underlying disease process. I thought that was quite an interesting concept and if it's proven right it would mean that people with MSA actually belong under the Parkinson's umbrella. Things seem to be moving more rapidly now on the research front as they are making new discoveries every day. We already had heard recently that people with Parkinson's, MSA and Lewy Body Disease all have a protein called alpha-synuclein in their brain cells and researchers were now lumping these disorders together and calling them Synucleinopathies. We should all support basic brain research because the breakthrough lies there at the cellular level as researchers uncover the chemical processes that regulate brain cell functions. Hugs, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2000 Report Share Posted November 20, 2000 Pam, How realistic is the theory that SDS and Parkinson's might come under the Parkinson umbrella and is there any info indicating that treatment for Parkinson's might help with SDS? I know you're not a doctor and you've been on this site a long time as have I since Sylvia started it. I don't write much but I do observe letters that relate to the disease rather than personal and difficult experiences. I leave that to those who have the need greater than i. I just pass info on to my sister who is the caretaker for her husband who has been to Vanderbilt and has had the disease for 8 or 9 years now. Not getting any better at all, just a slow constant degradation in his health. You are really to be commended for doing what you are. Must be very time consuming. Legge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2000 Report Share Posted November 20, 2000 Pam, Yes, I received your ex's and thank you so much. Haven't had time today to really sit down and digest them. I've been deluged with voting jokes from Florida and I'm going in for a sleep study tonight. I'll get back to you in a few days if I need further help. Barb P (VA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2000 Report Share Posted November 20, 2000 Thanks for the data. Sure hope it comes in time to help those with the disease not to mention the caretakers who may have it just as tough. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2000 Report Share Posted November 20, 2000 , I think Pam is referring to recent studies implicating a certain protein which seems to attack different brain cells. From what I read it seems to kill the cell much like ivy attacks and kills a tree. Sorry, I can not remember the exact spelling, but it is something like syn-nuclean. In Parkinson's it would attack the dopamine producing neurons and in MSA (SDS) it seems to attack the glial cells. This may not be the final answer in either disorder, but the research is vital to a cure. Take care, Bill and Charlotte Werre ---------------------------------------------------------------------------------------------- alconjohn@... wrote: Pam, How realistic is the theory that SDS and Parkinson's might come under the Parkinson umbrella and is there any info indicating that treatment for Parkinson's might help with SDS? I know you're not a doctor and you've been on this site a long time as have I since Sylvia started it. I don't write much but I do observe letters that relate to the disease rather than personal and difficult experiences. I leave that to those who have the need greater than i. I just pass info on to my sister who is the caretaker for her husband who has been to Vanderbilt and has had the disease for 8 or 9 years now. Not getting any better at all, just a slow constant degradation in his health. You are really to be commended for doing what you are. Must be very time consuming. Legge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 I agree with his compliments. Marilyn in TN ---------- From: alconjohn@... To: shydrageregroups Subject: Re: re: Explanation, please? Date: Mon, Nov 20, 2000, 5:15 PM Pam, How realistic is the theory that SDS and Parkinson's might come under the Parkinson umbrella and is there any info indicating that treatment for Parkinson's might help with SDS? I know you're not a doctor and you've been on this site a long time as have I since Sylvia started it. I don't write much but I do observe letters that relate to the disease rather than personal and difficult experiences. I leave that to those who have the need greater than i. I just pass info on to my sister who is the caretaker for her husband who has been to Vanderbilt and has had the disease for 8 or 9 years now. Not getting any better at all, just a slow constant degradation in his health. You are really to be commended for doing what you are. Must be very time consuming. Legge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 Sorry , I totally missed it when you sent this note and I don't see it in the archives. Very strange. From what I've been reading lately about alpha-synuclein it seems researchers are excited that it might hold a key to Alzheimer's, Parkinson's, Diffuse Lewy Body Disease and MSA. In the MSA newsletter that Don and Sylvia put out recently, Dr. on at Vanderbilt said: RESEARCH REPORT By Dr. on Multiple System Atrophy: Now a Major Research Priority For many years, only a few physicians were working to discover the cause and treatment of multiple system atrophy. This changed perceptibly in the 1990s as Physicians interested in the autonomic nervous system organized the American Autonomic Society. At the same time, neurologists interested in Parkinson’s disease began taking a greater interest in MSA. Now for the first time in history there is a critical mass of physicians and scientists whose major interest is in understanding and curing this disease. Extraordinary achievements have recently been made. At first the Shy-Drager syndrome seemed like a particularly severe form of Parkinson’s disease. Now the clinical differences have begun to emerge. The poor response to levodopa, the early autonomic involvement, the prominent urinary tract symptoms, cerebella involvement, apnea, emotional volatility and cranial nerve involvement and peripheral neuropathy are recognized as characteristic of MSA rather than Parkinson’s disease. Differences in physical findings also soon emerged: the cold hands of the MSA patient. What is exciting to us now is the identification of significant functional differences in MSA and Parkinson’s disease. For example, we now understand that in Parkinson’s disease, surprisingly, there is significant involvement of the autonomic nerves in the heart, and many Parkinson’s patients seem to lose almost all of their cardiac sympathetic nervous system innervation. In MSA, normal levels of sympathetic innervation of the heart seem to be present. This is encouraging because it means that the nerves are still there if we can just learn to control them properly. The importance of this was made clear by recent studies using the drug trimethaphan, which transiently shuts down both parasympathetic and sympathetic activity. It was found that in MSA patients, this drug greatly altered blood pressure and heart rate, proving that even though the patients had orthostatic hypotension, they still had plenty of sympathetic control of their vessels. It is just that this control could not be marshaled appropriately by the brain to do the job it needed to do. Yet, the most exciting new research is focusing on the similarities emerging in many of the neurodegenerative diseases such as MSA, Parkinson’s disease, and even Alzheimer’s disease. Alpha-Synuclein has been identified in tiny bodies in the brain cells of patients with MSA. These are called glial cytoplasmic inclusions and while structurally distinct from the Lewy bodies of Parkinson’s disease, nevertheless, seem to have many of the same components in them. The widespread presence of this alpha-synuclein has encouraged some scientists in the past few months to classify Parkinson’s disease and MSA by the new name of "synucleinopathies." Alpha-synuclein is a normal component of the human genome. Therefore, it obviously has some important purpose although that purpose is not now understood. Still, when it is present in such extraordinarily high concentrations in the brain cells of patients with MSA, that surely must be telling us something about the cause of MSA. Alpha-synuclein does not appear to be the culprit causing MSA but it may only be one or two steps away. That offers much hope for understanding MSA. In alpha-synuclein, we may not yet have discovered the perpetrator, but at least we have apprehended one of the accomplices. And we expect to learn a great deal from this accomplice. Clearly, we have made greater progress in understanding the cause of MSA in the past three years than in the previous 100 years. There is every reason to expect more progress in the future. I have never been more optimistic about discovery of the cause of MSA than I am in the millennial year. This is another quote from him in the USA Today article about ny Cash: http://www.usatoday.com/life/health/doctor/lhdoc023.htm To find a cure(for MSA), the cause must first be identified. That is the primary focus for (Dr. ) on and his research team at Vanderbilt. Earlier this year, they made a promising discovery. "An important hint about the cause has been the discovery of deposits of (the protein) synuclein in the brain," he offers. "If we can learn why this protein is laid down abnormally in MSA, we will probably uncover the cause of the disease." on is optimistic. "There is enormous medical progress being made in neurological diseases," he says. "Quite honestly, I think in five years we're going to know the cause of Shy-Drager(MSA), plus Alzheimer's, and Parkinson's." As he points out, uncovering the cause is close at hand and the cause of MSA seems to be close to the same cause of Parkinson's. Parkinson's and MSA have already been reclassified as "synucleinopathies", according to him. Currently none of the available treatments for Parkinson's though are nearly as effective for MSA. This seems to be because slightly different areas of the brain are involved in Parkinson's versus MSA. At the Center for Neurodegenerative Research http://www.med.upenn.edu/cndr/overview.html they are trying to uncover the causes of many similar disorders, including MSA. So far they've figured out that they all have something in common regarding protein interactions in the brain cells which form plaques or inclusions which may be the cause of the cells dying. If this is in fact the cause then logically it would seem that if they can figure out a drug that would prevent or reverse the plaque formation they could prevent or possibly improve upon the symptoms of these diseases. How far away such a treatment might be is not clear. I'll continue to watch the research developments about alpha-synuclein. Hope this is helpful. Regards, Pam and Marilyn wrote: I agree with his compliments. Marilyn in TN ---------- From: alconjohn@... To: shydrageregroups Subject: Re: re: Explanation, please? Date: Mon, Nov 20, 2000, 5:15 PM Pam, How realistic is the theory that SDS and Parkinson's might come under the Parkinson umbrella and is there any info indicating that treatment for Parkinson's might help with SDS? I know you're not a doctor and you've been on this site a long time as have I since Sylvia started it. I don't write much but I do observe letters that relate to the disease rather than personal and difficult experiences. I leave that to those who have the need greater than i. I just pass info on to my sister who is the caretaker for her husband who has been to Vanderbilt and has had the disease for 8 or 9 years now. Not getting any better at all, just a slow constant degradation in his health. You are really to be commended for doing what you are. Must be very time consuming. Legge Quote Link to comment Share on other sites More sharing options...
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