Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 i have same symptoms and problems, but, alas, no answers. n spires Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 Betsy, My father is experiencing similar things. He was just dx in January. He was raised a farm boy and has always loved farming as a hobby in his adult life. He loved to work in his garden and with his bees. This summer has been very difficult for him because it's the first time in his adult entire life that he hasn't been able to garden. He can't take the heat at all. For him, the difficulty with the heat is caused by his inability to sweat. He didn't have trouble in the winter. He also has swelling in his lower legs and feet. It's worse on his right side, which is his weakest. It's so unfair... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 Ken always wore TET hose to prevent the pooling of blood in his legs. He was told to put them on lying down in the morning before he stood up. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 I'll chime in, too, with the same symptoms -- exrtremities always cold to the point of numbness in my fingers, feet so swollen that putting socks on is a huge effort. I take florinef .1mg daily with one thermotab salt tablet. The resulting edema and discoloration are hard to live with, but I guess if the stuff keeps your BP from going through the cellar... " alternative " like " choice " seem to be outlandish concepts in the world of MSA. There aren't any alternatives of which I'm aware re this particular aspect.(would appreciate any sugg'ns). Take care, All Tony in Boston > i have same symptoms and problems, but, alas, no answers. n spires Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 Tony, YES, MSA limits your " choices " and you do have to make tradeoffs. My wife has to trade dyskinesia to allow some movement. She has for years put up with exercising daily to maintain what movement she has. Don't let MSA beat you. Take care, Bill and Charlotte =================================== swartz-lloyd@... wrote: > I'll chime in, too, with the same symptoms -- exrtremities always > cold to the point of numbness in my fingers, feet so swollen that > putting socks on is a huge effort. I take florinef .1mg daily with > one thermotab salt tablet. The resulting edema and discoloration are > hard to live with, but I guess if the stuff keeps your BP from going > through the cellar... " alternative " like " choice " seem to be > outlandish concepts in the world of MSA. There aren't any > alternatives of which I'm aware re this particular aspect.(would > appreciate any sugg'ns). > > Take care, All > Tony in Boston > > > > i have same symptoms and problems, but, alas, no answers. n > spires > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 Betsy, Warren's feet aren't swollen very often, but are red and sometimes almost purple. I always think they must be cold when they reach that color but when you touch them they aren't. Warren also hasn't dealt well with the cold (not as bad here as in Cincinnati I know) but it doesn't take much temp change to make him ask for either air or warmth. Sorry I can't be of any help but we just take one day at a time. Hang in there, S. SDS & Body Temp. > Being new to this site I watch closely most all of the postings and > have gained a great deal of knowledge from you all. Charlie , my > husband has SDS and as he progresses to new phases of this disease of > try my best to understand and learn all to help him cope. We live in > the Cincinnati area and this past winter was extremely hard for him. > All that is hard for him mobility and circulation was made much worse > by the temps. Now as we have waited for warmer weather here again he > is in the same situation with heat. I have read all tips on helpful > ways to control his low blood pressure. Alot has helped. Is the > adjustment to these weather temps. because of his blood pressure and > the inability of proper circulation? He does not over-exert himself , > it is just the gradual change from the house to just sitting outside. > I heart aches for him to have to adjust to not being able to just work > in the yard a little bit. Now we find that unless there is an ideal > temp. he has a hard time enjoying the home and yard he has loved for > years. > He also has started to experience swelling in his legs and feet.Mostly > on his left side , that is his weakest.He does have support hose and > along with watching salt intake to help with his blood pressure , he > does drink as much water and gateraide as he can. Some days his feet > are swollen and very red. Thank you once again and God Bless you all. > Betsy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 - Thanks Barb , Charlie uses the hose but I have not put them on before he sttod up in the am. I will try that , Betsy -- In shydrager@y..., kmcrae@a... wrote: > Ken always wore TET hose to prevent the pooling of blood in his legs. He was > told to put them on lying down in the morning before he stood up. > Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 -- , I can relate to what you are saying. Especially the color. This temperature thing is a new phase we are entering. As before and as you said one day at a time. I'm lucky , Charlie is a very patient and non demanding person. But I can tell as time goes by it gets harder and requires more of him each week. Betsy - In shydrager@y..., " Strong " <mlstrong@j...> wrote: > Betsy, > Warren's feet aren't swollen very often, but are red and sometimes almost > purple. I always think they must be cold when they reach that color but when > you touch them they aren't. Warren also hasn't dealt well with the cold > (not as bad here as in Cincinnati I know) but it doesn't take much temp > change to make him ask for either air or warmth. Sorry I can't be of any > help but we just take one day at a time. > Hang in there, S. > SDS & Body Temp. > > > > Being new to this site I watch closely most all of the postings and > > have gained a great deal of knowledge from you all. Charlie , my > > husband has SDS and as he progresses to new phases of this disease of > > try my best to understand and learn all to help him cope. We live in > > the Cincinnati area and this past winter was extremely hard for him. > > All that is hard for him mobility and circulation was made much worse > > by the temps. Now as we have waited for warmer weather here again he > > is in the same situation with heat. I have read all tips on helpful > > ways to control his low blood pressure. Alot has helped. Is the > > adjustment to these weather temps. because of his blood pressure and > > the inability of proper circulation? He does not over-exert himself , > > it is just the gradual change from the house to just sitting outside. > > I heart aches for him to have to adjust to not being able to just work > > in the yard a little bit. Now we find that unless there is an ideal > > temp. he has a hard time enjoying the home and yard he has loved for > > years. > > He also has started to experience swelling in his legs and feet.Mostly > > on his left side , that is his weakest.He does have support hose and > > along with watching salt intake to help with his blood pressure , he > > does drink as much water and gateraide as he can. Some days his feet > > are swollen and very red. Thank you once again and God Bless you all. > > Betsy > > > > > > Quote Link to comment Share on other sites More sharing options...
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