Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 I am an RN and it took two years of searching the net and putting together the " puzzle " of my Dad's symptoms, persuading our family MD to do the appropriate tests etc to finally reach the diagnosis of MSA (Shy Drager)Basically by ruling everything else out and waiting for more symptoms to develop! Despite his complaints of being exhausted all the time, weak, and lightheaded with poor balance, no one checked his sitting and standing BP until I bought a cuff this summer and began a diary. His earliest symptom (3-4 years ago) was sleep disturbance which eventually was diagnosed as REM sleep behavior disorder. He now suffers from severe orthostatic hypotension which has responded nicely to Florinef. Needless to say, this vital and active retired police detective has been feeling depressed and hopeless as he gradually was no longer able to do anything he enjoyed but kept being told there was nothing wrong with him(ECG, stress tests, pulmonary function etc etc all normal) We would like to confirm the diagnosis and get on with things but live in an isolated area of Canada (just north of the northern border o Michigan's upper peninsula) We do not have a neurologist locally much less a specialist in MSA We would be willing to travel into Michigan or Minnesota if nec Any suggestions or info would be greatly appreciated Sincerely, a (paulahoop@...) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Hi a, Are you near Sault Ste. Marie? In Michigan I suggest Dr. Sid Gilman http://www.med.umich.edu/neuro/gilman.htm or one of his colleagues at the University of Michigan in Ann Arbor, MI. He works in the Ataxia Clinic. http://www.med.umich.edu/neuro/ataxia.htm In Minnesota I suggest Dr. Philip Low or one of his colleagues at the Mayo Clinic in Rochester, MN. Mayo has an online form for International Visitors to request an appointment: http://www.mayoclinic.org/english/ I know a family here in Nova Scotia who just travelled to the Mayo Clinic. They were quite happy with the experience. Good luck, Pam Near Halifax, NS dad just diagnosed > I am an RN and it took two years of searching the net > and putting together the " puzzle " of my Dad's > symptoms, persuading our family MD to do the > appropriate tests etc to finally reach the diagnosis > of MSA (Shy Drager)Basically by ruling everything else > out and waiting for more symptoms to develop! > Despite his complaints of being exhausted all the > time, weak, and lightheaded with poor balance, no one > checked his sitting and standing BP until I bought a > cuff this summer and began a diary. > His earliest symptom (3-4 years ago) was sleep > disturbance which eventually was diagnosed as REM > sleep behavior disorder. He now suffers from severe > orthostatic hypotension which has responded nicely to > Florinef. > Needless to say, this vital and active retired police > detective has been feeling depressed and hopeless as > he gradually was no longer able to do anything he > enjoyed but kept being told there was nothing wrong > with him(ECG, stress tests, pulmonary function etc etc > all normal) > We would like to confirm the diagnosis and get on with > things but live in an isolated area of Canada (just > north of the northern border o Michigan's upper > peninsula) We do not have a neurologist locally much > less a specialist in MSA We would be willing to travel > into Michigan or Minnesota if nec > Any suggestions or info would be greatly appreciated > Sincerely, a (paulahoop@...) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Thanks for responding Pam We live in Sault Ste Marie ON > Hi a, > > Are you near Sault Ste. Marie? > > In Michigan I suggest Dr. Sid Gilman > http://www.med.umich.edu/neuro/gilman.htm > or one of his colleagues at the University of Michigan in Ann Arbor, MI. > He works in the Ataxia Clinic. http://www.med.umich.edu/neuro/ataxia.htm > > In Minnesota I suggest Dr. Philip Low or one of his colleagues at the Mayo > Clinic in Rochester, MN. Mayo has an online form for International Visitors > to request an appointment: http://www.mayoclinic.org/english/ > > I know a family here in Nova Scotia who just travelled to the Mayo Clinic. > They were quite happy with the experience. > > Good luck, > Pam > Near Halifax, NS > > dad just diagnosed > > > > I am an RN and it took two years of searching the net > > and putting together the " puzzle " of my Dad's > > symptoms, persuading our family MD to do the > > appropriate tests etc to finally reach the diagnosis > > of MSA (Shy Drager)Basically by ruling everything else > > out and waiting for more symptoms to develop! > > Despite his complaints of being exhausted all the > > time, weak, and lightheaded with poor balance, no one > > checked his sitting and standing BP until I bought a > > cuff this summer and began a diary. > > His earliest symptom (3-4 years ago) was sleep > > disturbance which eventually was diagnosed as REM > > sleep behavior disorder. He now suffers from severe > > orthostatic hypotension which has responded nicely to > > Florinef. > > Needless to say, this vital and active retired police > > detective has been feeling depressed and hopeless as > > he gradually was no longer able to do anything he > > enjoyed but kept being told there was nothing wrong > > with him(ECG, stress tests, pulmonary function etc etc > > all normal) > > We would like to confirm the diagnosis and get on with > > things but live in an isolated area of Canada (just > > north of the northern border o Michigan's upper > > peninsula) We do not have a neurologist locally much > > less a specialist in MSA We would be willing to travel > > into Michigan or Minnesota if nec > > Any suggestions or info would be greatly appreciated > > Sincerely, a (paulahoop@y...) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 a, Welcome to our list, sorry you had to find us. I agree with Pam about Mayo or Michigan, we have heard good things about both places. Most of us too went through the struggle to find what we were dealing with. Unfortunately, there is no cure for it and all we can do is attempt to treat the symptoms and encourage the patient to do their daily range of motion and speech exercises. Make sure your dad starts keeping track of how much liquid he drinks also. MSA patients tend to become dehydrated which causes infections. Take care, Bill Werre ======================== a Hooper wrote: >I am an RN and it took two years of searching the net >and putting together the " puzzle " of my Dad's >symptoms, persuading our family MD to do the >appropriate tests etc to finally reach the diagnosis >of MSA (Shy Drager)Basically by ruling everything else >out and waiting for more symptoms to develop! >Despite his complaints of being exhausted all the >time, weak, and lightheaded with poor balance, no one >checked his sitting and standing BP until I bought a >cuff this summer and began a diary. >His earliest symptom (3-4 years ago) was sleep >disturbance which eventually was diagnosed as REM >sleep behavior disorder. He now suffers from severe >orthostatic hypotension which has responded nicely to >Florinef. >Needless to say, this vital and active retired police >detective has been feeling depressed and hopeless as >he gradually was no longer able to do anything he >enjoyed but kept being told there was nothing wrong >with him(ECG, stress tests, pulmonary function etc etc >all normal) >We would like to confirm the diagnosis and get on with >things but live in an isolated area of Canada (just >north of the northern border o Michigan's upper >peninsula) We do not have a neurologist locally much >less a specialist in MSA We would be willing to travel >into Michigan or Minnesota if nec >Any suggestions or info would be greatly appreciated >Sincerely, a (paulahoop@...) > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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