Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 Two days before I even knew nothing about MSA.Cause my uncle has been afflicted by the disease something like orthostatic hypotension and till now the final diagnose is Orthostatic Hypotension(in chinese).I am not the one major in medicine and even perplexed in so many definations such as MSA,PAF,its special translation from english to chinese and so on!But from the symptoms my uncle presents clearly like cerebellar atrophy (has been diagnosed one year before)\urinary incontinence or retention\difficulty with walking,speaking and writing\sweating impairment\othostatic lower pressure, maybe it is the symptoms of MSA compared with authoritative sayings.As far as I know ,my uncle is still treated as orthostatic hypotension that is just a direct sign of MSA. I don't know exactly what I could do for my uncle,he is so young just a little more than forty.All of my families are worried about his disease and future outlook of it.If only my uncle would join in here!Maybe he will know there in the world are so many people like him who are living with optimism and wish. Regards to everyone here!! himi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 Himi, Where are you in China? Helen Regards Two days before I even knew nothing about MSA.Cause my uncle has been afflicted by the disease something like orthostatic hypotension and till now the final diagnose is Orthostatic Hypotension(in chinese).I am not the one major in medicine and even perplexed in so many definations such as MSA,PAF,its special translation from english to chinese and so on!But from the symptoms my uncle presents clearly like cerebellar atrophy (has been diagnosed one year before)\urinary incontinence or retention\difficulty with walking,speaking and writing\sweating impairment\othostatic lower pressure, maybe it is the symptoms of MSA compared with authoritative sayings.As far as I know ,my uncle is still treated as orthostatic hypotension that is just a direct sign of MSA. I don't know exactly what I could do for my uncle,he is so young just a little more than forty.All of my families are worried about his disease and future outlook of it.If only my uncle would join in here!Maybe he will know there in the world are so many people like him who are living with optimism and wish. Regards to everyone here!! himi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 hi Helen I indeed come from China!I joined here for my uncle's disease two days before. Himi Regards > > Two days before I even knew nothing about MSA.Cause my uncle has been > afflicted by the disease something like orthostatic hypotension and till > now the final diagnose is Orthostatic Hypotension(in chinese).I am not > the one major in medicine and even perplexed in so many definations such > as MSA,PAF,its special translation from english to chinese and so on!But > from the symptoms my uncle presents clearly like cerebellar atrophy (has > been diagnosed one year before)\urinary incontinence or > retention\difficulty with walking,speaking and writing\sweating > impairment\othostatic lower pressure, maybe it is the symptoms of MSA > compared with authoritative sayings.As far as I know ,my uncle is still > treated as orthostatic hypotension that is just a direct sign of MSA. > > > > I don't know exactly what I could do for my uncle,he is so young just a > little more than forty.All of my families are worried about his disease > and future outlook of it.If only my uncle would join in here!Maybe he > will know there in the world are so many people like him who are living > with optimism and wish. > > > > Regards to everyone here!! > > himi > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 Helen, Maybe you want to know whether I live in China! I am a chinese and I pursue my study in Beijing,China. Himi Regards > > Two days before I even knew nothing about MSA.Cause my uncle has been > afflicted by the disease something like orthostatic hypotension and till > now the final diagnose is Orthostatic Hypotension(in chinese).I am not > the one major in medicine and even perplexed in so many definations such > as MSA,PAF,its special translation from english to chinese and so on!But > from the symptoms my uncle presents clearly like cerebellar atrophy (has > been diagnosed one year before)\urinary incontinence or > retention\difficulty with walking,speaking and writing\sweating > impairment\othostatic lower pressure, maybe it is the symptoms of MSA > compared with authoritative sayings.As far as I know ,my uncle is still > treated as orthostatic hypotension that is just a direct sign of MSA. > > > > I don't know exactly what I could do for my uncle,he is so young just a > little more than forty.All of my families are worried about his disease > and future outlook of it.If only my uncle would join in here!Maybe he > will know there in the world are so many people like him who are living > with optimism and wish. > > > > Regards to everyone here!! > > himi > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Himi, Welcome to our list. I am sorry that you had to look for us. Don't worry about what it is called as MSA, PSP, CBGD and the others only refer to the group of symptoms that you have and are not any real help in fighting the disease. You need to focus on how to live as good a life as possible by fighting the symptoms. To do that we have found several rules that help which are: * Work with your doctor by carefully describing your symptoms to them. Keep a log of blood pressure (BP), temperature and symptoms. Note times and dates of changes in your symptoms, medicines and even what you eat. Then write a short summary for each doctor visit such as average BP, high and low BP, (same for temperature), and anything else that is new (good or bad). If a medicine works - tell the doctor. If a medicine does not work or you have new problems - tell the doctor. Read up on side effects and tell the doctor if you have side effects (and how bad the side effects are). * All of these disorders affect movement at some time. So to keep as much movement as possible - exercise every day. Fast moving exercise (aerobic) is okay if you are able, but range of motion exercise is essential. The same applies to speech and swallowing, we have a list of exercises on the " links " portion of the list website. http://groups.yahoo.com/group/shydrager/ * Drinking is also essential as it helps prevent infection and also helps keep BP steady. Eating properly is also helpful. Stick with this list and ask questions, someone here has seen the problems you will encounter and can offer suggestions as to what they did. Take care, Bill Werre =========================== lxy wrote: >Two days before I even knew nothing about MSA.Cause my uncle has been afflicted by the disease something like orthostatic hypotension and till now the final diagnose is Orthostatic Hypotension(in chinese).I am not the one major in medicine and even perplexed in so many definations such as MSA,PAF,its special translation from english to chinese and so on!But from the symptoms my uncle presents clearly like cerebellar atrophy (has been diagnosed one year before)\urinary incontinence or retention\difficulty with walking,speaking and writing\sweating impairment\othostatic lower pressure, maybe it is the symptoms of MSA compared with authoritative sayings.As far as I know ,my uncle is still treated as orthostatic hypotension that is just a direct sign of MSA. > > > >I don't know exactly what I could do for my uncle,he is so young just a little more than forty.All of my families are worried about his disease and future outlook of it.If only my uncle would join in here!Maybe he will know there in the world are so many people like him who are living with optimism and wish. > > > >Regards to everyone here!! > >himi > Quote Link to comment Share on other sites More sharing options...
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