Guest guest Posted November 6, 2000 Report Share Posted November 6, 2000 wrote: > R, > > My mothers Doctor did a tilt table, they checked her oxygen levels, > BP sitting, standing, etc., cat scan, We found several doctors that > had never heard of shydrager. Several doctors told us she didn't have > it because there were no signs of parkinsons. We were lucky because > my mothers doctor is a cardiologist and internal specialist. He does > lectures all over the world and is always reading and staying updated > on everything. He told us it is not uncomon for a doctor to never > here of or see MSA unless they attended a teaching hospital. Good > Luck finding a doctor. I would start with Vandrbuilt Hospital in > Tenn. That was the only place I was able to get information five > years ago. I have found that if you take info from the national > organization of Rare diseases with you to a doctor, some times they > will follow it up and do investigating on their own. > Love and prayers, > > > > > We need more information on multiple system atrophy. My partner has > > been diagnosed with this about 1 year ago, and two years before > that > > with parkinsons disease. We know very little about this disease > called > > MSA, except for the fact that we are living daily with it. There > seems > > to be so many things happening and so fast, from lightheadeness,no > > balance and falling, constipation, bladder not working and the list > > keeps going on. Please give us direction as to where to go for > help. > > Like doctors, what tests should be done, should we be going to > > Rochester for tests, or is there similair places in Canada. Please > > give us help... > > > > Thank you > > R > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 , That is a fairly accurate accessment of MSA. There are probably 30-80,000 people with MSA in the USA today. Compared to about 1,500,000 Parkinson's patients and maybe 300,000 AIDS patients. There is some research being done on MSA, but not nearly as much as AIDS. In fact Parkinson's and all the Parkinson's Plus disorders have not had any where near the research of AIDS since Reagan cut the Parkinson's research in 1981 and gave an equivalent amount to AIDS research. You can check the NIH records. With MSA at this time, treatment is only for symptoms as there is no cure. They have made great strides in Parkinson's research since Clinton was elected and removed the ban on cell research in 1993. They now feel that a certain protein is attacking a certain brain cell in MSA and causing the problems. This research is expensive and pharmacutical companies must make a profit, so they are not as likely as the government to research something like this (MSA). It is extremely important to keep a log on when you take meds, when you eat, when you get relief, when the symptoms come back, BP, temperature, etc. Then summarize these notes into a few short paragraphs and give them to your doctor. This can help the doctor decide how well the meds are working. Knowing the patients " normal " temperature and BP can help in cases of infection - i.e. if the patient runs a temperature of 96.6 - 96.8 for weeks, then suddenly has a temperature of 98.6 that is 2 degrees above normal for them and equivalent of a 100.6 for a normal person. Your note of no more seizures since being on the medicine for it shows you are watching closely. Often sudden changes for the worse are temporary due to infection and once the infection is cleared up, therapy may help the patient recover to where they were before. If you wait too long to start the therapy, it is not as likely to come back. Push for the therapy! I personally do not like to compare Parkinson's " stages " with MSA " stages " as it may seem hopeless. Parkinson's patients often go through the first 6-7 stages over a long period of time. MSA patients often go through them more rapidly, but may actually live longer in the later stages, especially if they start using a wheelchair before they fall and break a hip or fracture their skull. Falls like this can hurt MSA patients greatly. One fall can cripple a MSA patient for months and take them through several PD stages during that period. Take care, Bill and Charlotte ---------------------------------------------------------------------- wrote: > lee, > > On the main page of our egroup there are links, I just checked these > links out last night. I really recommend that you do the same I got > alot of information. There are alot of different sites and > information, so look up as many as you can. I printed them so I > could read them and have them for references. The tests I were > refering to were some that they used to diagnose my mom with MSA > (Shydrager) Then her doctor treats the symptoms as she has them. > Florinef for her bloodpressure (because it drops so suddenly,Coreg is > a heart medication, and carbamazepine is for seizures. She hasn't had > anymore problems with siezures since she started the medication. They > had to increase her florinef for a while and recently decreased it > because her bloodpressure went to high. I think one of the things > I've learned is to expect just about anything. Also I recommend close > monitoring by his doctor. I'm not sure about stages like parkinsons, > >From what I've read this disease affects everyone differently than > others yet similar. Some people are hit harder all at once where as > others it affects more slowly. I've been told that this is still rare > and there hasn't been enough documentation to give us certain or > typical solution. What I'm trying to say is there just hasn't been > enough study to really know for sure. Let me know if these links > help you as much as they helped me. > Remember I've lived with this disease for 5 years but I'm just now > catching up on the news since I've been on line. The best of luck to > you both. Remember when times get tough prayer really does help! > > Okay guys and gals let me know if I'm wrong about any of this. > For and for me! Thanks > > > > > > We need more information on multiple system atrophy. My partner > has > > > > been diagnosed with this about 1 year ago, and two years before > > > that > > > > with parkinsons disease. We know very little about this disease > > > called > > > > MSA, except for the fact that we are living daily with it. There > > > seems > > > > to be so many things happening and so fast, from > lightheadeness,no > > > > balance and falling, constipation, bladder not working and the > list > > > > keeps going on. Please give us direction as to where to go for > > > help. > > > > Like doctors, what tests should be done, should we be going to > > > > Rochester for tests, or is there similair places in Canada. > Please > > > > give us help... > > > > > > > > Thank you > > > > R > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 2nd request; if anyone has the info on the disabilities expo in Atlanta ,please forward as I must have deletleted by mistake thanks Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 Tom, I found this in the archive at egroups: >From: pbower@i... >To: shydrageregroups >Subject: Fwd: World Congress & Exposition on Disabilities - Atlanta, November 10-12, 2000 >Date: Wed, Nov 1, 2000, 2:51 PM > >This is the conference that is happening in Atlanta November 10 to >12th. > >Regards, >Pam Take care, Bill and Charlotte Turboom@... wrote: > 2nd request; if anyone has the info on the disabilities expo in Atlanta > ,please forward as I must have deletleted by mistake thanks Tom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 Tom, I found this in the archive at egroups: >From: pbower@i... >To: shydrageregroups >Subject: Fwd: World Congress & Exposition on Disabilities - Atlanta, November 10-12, 2000 >Date: Wed, Nov 1, 2000, 2:51 PM > >This is the conference that is happening in Atlanta November 10 to >12th. > >Regards, >Pam Take care, Bill and Charlotte Turboom@... wrote: > 2nd request; if anyone has the info on the disabilities expo in Atlanta > ,please forward as I must have deletleted by mistake thanks Tom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 Pam is the one who sent it to me. It was a web site. I must have deleted it also since we are already driving to Vanderbilt four days a week from Tullahoma. I did look up the web site. The conference sounded interesting. Marilyn in TN ---------- > >To: shydrageregroups >Subject: Re: Re: shydrager >Date: Tue, Nov 7, 2000, 8:36 PM > >Tom, > >I found this in the archive at egroups: > >>From: pbower@i... > >To: shydrageregroups > >Subject: Fwd: World Congress & Exposition on Disabilities - >Atlanta, > November 10-12, 2000 > >Date: Wed, Nov 1, 2000, 2:51 PM > > > > >This is the conference that is happening in Atlanta November 10 >to > >12th. > > > >Regards, > >Pam > >Take care, Bill and Charlotte > >Turboom@... wrote: > >> 2nd request; if anyone has the info on the disabilities expo in Atlanta >> ,please forward as I must have deletleted by mistake thanks Tom >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 thanks bill.....one of the posts had time schedule. iwas looking for that as well but this helps tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2000 Report Share Posted November 8, 2000 what is the site address and by the way ......thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2000 Report Share Posted November 8, 2000 Tom, The egroups site is at /group/shydrager Once there just Sign in (if you don't automatically) and go to messages (over on the left). Once in messages you can search the messages - I searched for "disabilities" and got several hits. I remembered it was Pam that sent it the first time so I looked for one with her name. You can do that for "incontinence" or "wheelchairs" or anything else and find lots of messages on that subject. This is even better than Jeff's archive as he could only keep about 2 months of messages there. I am started a list of "keywords" on the calendar next to my computer, if I see a messge I want to remember - I try to find a word that is not used often and copy it to the wall pad with a note. Or you could highlight it, copy and paste it to a wordpad file. Take care, Bill and Charlotte ------------------------------------------------------------------------------------------------- Turboom@... wrote: what is the site address and by the way ......thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2000 Report Share Posted November 13, 2000 Hello all. Just want to make sure I am still signed on (don't know why I wouldn't be, only I was surprised to find no emails from the group over the weekend!). Suzanne Grimmesey-Kirk, MFT Quality Care Management Voice: 884-1647 FAX: 884-1633 >>> bwerre@... 11/08/00 07:44AM >>> Tom, The egroups site is at /group/shydrager Once there just Sign in (if you don't automatically) and go to messages (over on the left). Once in messages you can search the messages - I searched for " disabilities " and got several hits. I remembered it was Pam that sent it the first time so I looked for one with her name. You can do that for " incontinence " or " wheelchairs " or anything else and find lots of messages on that subject. This is even better than Jeff's archive as he could only keep about 2 months of messages there. I am started a list of " keywords " on the calendar next to my computer, if I see a messge I want to remember - I try to find a word that is not used often and copy it to the wall pad with a note. Or you could highlight it, copy and paste it to a wordpad file. Take care, Bill and Charlotte --------------------------------------------------------------------------------\ ----------------- Turboom@... wrote: > what is the site address and by the way ......thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2000 Report Share Posted November 13, 2000 Suzanane - I received several - I think yours are just delayed. Love, Mom >>> " Suzanne Grimmesey-Kirk " 11/13/00 08:07AM >>> Hello all. Just want to make sure I am still signed on (don't know why I wouldn't be, only I was surprised to find no emails from the group over the weekend!). Suzanne Grimmesey-Kirk, MFT Quality Care Management Voice: 884-1647 FAX: 884-1633 >>> bwerre@... 11/08/00 07:44AM >>> Tom, The egroups site is at /group/shydrager Once there just Sign in (if you don't automatically) and go to messages (over on the left). Once in messages you can search the messages - I searched for " disabilities " and got several hits. I remembered it was Pam that sent it the first time so I looked for one with her name. You can do that for " incontinence " or " wheelchairs " or anything else and find lots of messages on that subject. This is even better than Jeff's archive as he could only keep about 2 months of messages there. I am started a list of " keywords " on the calendar next to my computer, if I see a messge I want to remember - I try to find a word that is not used often and copy it to the wall pad with a note. Or you could highlight it, copy and paste it to a wordpad file. Take care, Bill and Charlotte --------------------------------------------------------------------------------\ ----------------- Turboom@... wrote: > what is the site address and by the way ......thanks > Quote Link to comment Share on other sites More sharing options...
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