Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 , There are others with Shy-Drager on this list from Arizona that may be able to help you. You will learn a lot from just reading here on this list. Pam and Bill know so much. MANY others do too. Are you in the Phoenix area? You are in the right place on this list in getting some of the help you need. These people have been there and know what you are going through. There are some very couragious people here. There are people who have experienced the same things you have and are willing to share what they have learned. Just reading and writing will help you to find the answers to live with this disease better. I am sorry you have had such a hard time and it is hard to move to a new place with all you have going on. The good thing is that your life will be better with what you learn here. Jean (Phoenix) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 , Everyone with MSA has gone through a period of not knowing what it is. Many took five years even with good doctors to find out that they have " probable " MSA. There is no test for MSA at this time, it is only a collection of symptoms and neurological signs. The only true test for MSA is an autopsy, so don't rush a diagnoses ) Having MSA at a younger age is very rare, but not unheard of. Instead concentrate on getting them to treat the symptoms. The low BP can be treated with florinf or Proamantine (and adding salt to diet). If the BP goes too high when laying down, raise the head of the bed 4-6 inches. Muscle twitching and dystonia may react well to muscle relaxers or antispasm meds like Baclofen. If they do not work and the dysonia is bad, Botox shots can help (with exercise). Please note that some muscle relaxers (such as Soma) can cause MSA symptoms if over used and abused, especially if mixed with even small amounts of alcohol or recreational drugs. So follow your doctor's instructions carefully if using them. Sleep apnea is treatable with CPAP or BiPAP. You doctor can get you a sleep test and help there. Not able to walk - use a wheelchair, it's much safer. Many PD/Ataxia groups have lists of available wheelchairs they will loan you. Have you tried Colace (ducsolate sodium) for the constipation? It worked for my wife and others here on the list. Hang in there, Bill Werre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 , Everyone with MSA has gone through a period of not knowing what it is. Many took five years even with good doctors to find out that they have " probable " MSA. There is no test for MSA at this time, it is only a collection of symptoms and neurological signs. The only true test for MSA is an autopsy, so don't rush a diagnoses ) Having MSA at a younger age is very rare, but not unheard of. Instead concentrate on getting them to treat the symptoms. The low BP can be treated with florinf or Proamantine (and adding salt to diet). If the BP goes too high when laying down, raise the head of the bed 4-6 inches. Muscle twitching and dystonia may react well to muscle relaxers or antispasm meds like Baclofen. If they do not work and the dysonia is bad, Botox shots can help (with exercise). Please note that some muscle relaxers (such as Soma) can cause MSA symptoms if over used and abused, especially if mixed with even small amounts of alcohol or recreational drugs. So follow your doctor's instructions carefully if using them. Sleep apnea is treatable with CPAP or BiPAP. You doctor can get you a sleep test and help there. Not able to walk - use a wheelchair, it's much safer. Many PD/Ataxia groups have lists of available wheelchairs they will loan you. Have you tried Colace (ducsolate sodium) for the constipation? It worked for my wife and others here on the list. Hang in there, Bill Werre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 --, I am sorry that we had to meet this way but you have come to the right place. We do have alot of knowledge in this group that will be able to help you. I know how fortunate that I feel being apart of this group. I know that it is depressing not to be able to walk your daughter to the park. I have had doctors in the beginning tell me that I am " just " depressed but who wouldnt be if your body was doing some pretty rotten things to you. I hope that you find a good doctor and quite honestly a 4 month wait in Atlanta, GA seems to be the norm also. Please visit the group often because I know how helpful it can be. God Bless, Belinda - In shydrager@y..., " thustris " wrote: > Hello everyone, > > Want to introduce Myself. > I am a 30 year old female who now > lives in Arizona. > After 2 years of hospital admittions, > medical problems, firing docotors who didnt > know what they were talking about, they now think > they may have a diagnosis of Shy-. > I was living in New Mexico,and was sent to see > a neuro disease specialist from my regular nero. > Unfortuntely, there is only one in that city, four month > wait. Husband got laid off, and we moved to Arizona. > Kinda scared, because I had to apply for county > medcial ,(had blue cross) > Now the process has to start all over with new doctors:(( > > I have lived the last two years, with fainting spells, > due to low blood pressure. Severe constipation as > my bowels dont work. Only can go using mag citrate now, > which also causes me to faint:(( But the option is > removing most of the bowel, and dont want that. > Dytonia in my neck, sleep apnea, muscle twitching,... > irregular hb, list goes on....... > THey do now think its Shy-. The disesase specialist was > supposed to do a battery of tests on that. > Im so tierd of living life not able to plan for > tommorow. Not being able to walk my daughter to the park. > Im kinda in a down mode. Sorry to meet you all this way. > Im normaly very upbeat, but just havnt had any good > days latley:(( Im still kinda aghast. All the reading > I have found on this, says it is usualy men in thier > 50's, but Im female 30. > I would love any information you guys have. > How you deal with sleeping, constipation etc..... > THankyou for hearing me > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 ---Yeah, I did try colace, senta, even have a prescription of mirilax, none works. Only the citrate, and boy I hate using that stuff. My only option is surgery that will leave me with a tube in me for the rest of my life and the need to be by a bathroom: ( ,... SO I go on. I have a friend that had that surgery and he told me dont do it,lol. I just hope they give me the rite answers soon. They thought it was MS for a while, but now say autonomic. I dont know. Ill feel better once this state gets me back with a new neuro. NIce to meet you. WEndy In shydrager@y..., Werre wrote: > , > > Everyone with MSA has gone through a period of not knowing what it is. Many > took five years even with good doctors to find out that they have " probable " > MSA. There is no test for MSA at this time, it is only a collection of > symptoms and neurological signs. The only true test for MSA is an autopsy, > so don't rush a diagnoses ) Having MSA at a younger age is very rare, but > not unheard of. > > Instead concentrate on getting them to treat the symptoms. The low BP can be > treated with florinf or Proamantine (and adding salt to diet). If the BP > goes too high when laying down, raise the head of the bed 4-6 inches. > > Muscle twitching and dystonia may react well to muscle relaxers or antispasm > meds like Baclofen. If they do not work and the dysonia is bad, Botox shots > can help (with exercise). Please note that some muscle relaxers (such as > Soma) can cause MSA symptoms if over used and abused, especially if mixed > with even small amounts of alcohol or recreational drugs. So follow your > doctor's instructions carefully if using them. > > Sleep apnea is treatable with CPAP or BiPAP. You doctor can get you a sleep > test and help there. > > Not able to walk - use a wheelchair, it's much safer. Many PD/Ataxia groups > have lists of available wheelchairs they will loan you. > > Have you tried Colace (ducsolate sodium) for the constipation? It worked for > my wife and others here on the list. > > Hang in there, Bill Werre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 hi wendy, I am one of the young ones, too. I am 42 and have been dx by one neuro so far. Second opinion to follow. I have had symptoms at least 1 and a half years. I share most of your symptoms and i also have 2 young children, I use ambien to sleep. Constipation - i put up with. I also have ulcerative colitiis so i need to be careful to avoid a bleeding episode. My name is karen and they call me poconocrazy. I had hoped to grow old here in the beautiful pocono mts(pa), but now i take one day at a time. Would love to be of any help i can. Me e mail address is drcfamily@... God bless you, Newbie, Hello > Hello everyone, > > Want to introduce Myself. > I am a 30 year old female who now > lives in Arizona. > After 2 years of hospital admittions, > medical problems, firing docotors who didnt > know what they were talking about, they now think > they may have a diagnosis of Shy-. > I was living in New Mexico,and was sent to see > a neuro disease specialist from my regular nero. > Unfortuntely, there is only one in that city, four month > wait. Husband got laid off, and we moved to Arizona. > Kinda scared, because I had to apply for county > medcial ,(had blue cross) > Now the process has to start all over with new doctors:(( > > I have lived the last two years, with fainting spells, > due to low blood pressure. Severe constipation as > my bowels dont work. Only can go using mag citrate now, > which also causes me to faint:(( But the option is > removing most of the bowel, and dont want that. > Dytonia in my neck, sleep apnea, muscle twitching,... > irregular hb, list goes on....... > THey do now think its Shy-. The disesase specialist was > supposed to do a battery of tests on that. > Im so tierd of living life not able to plan for > tommorow. Not being able to walk my daughter to the park. > Im kinda in a down mode. Sorry to meet you all this way. > Im normaly very upbeat, but just havnt had any good > days latley:(( Im still kinda aghast. All the reading > I have found on this, says it is usualy men in thier > 50's, but Im female 30. > I would love any information you guys have. > How you deal with sleeping, constipation etc..... > THankyou for hearing me > > > > > 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...
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