Guest guest Posted September 26, 2006 Report Share Posted September 26, 2006 Hello. I'm not an actual sufferer, but am primary caregiver for my best friend--a 55-year old woman who has been diagnosed with the illness. I need help: my friend has been in hopsital in Oakland, Ca. since Sept 1st. She was admitted with a urinary tract infection-- which was treated and cured withn a few days. The thing is she continues to decline. Her speech and small motor functions are affected and she is nearly helpless--despite being back on iv solumedrol and undergoing blood pharysis. The past couple of days, her hands have become rigid and her mouth is not working very well. I spoke this evening with her neurologist- -who is a personal friend--and he simply doesn't know what is causing this--or what to do. My question is: is there ANYone doing CNS sarcoid work on the West Coast? (Dr. Sharma--USC?--seems to be only a lung guy.) If not, does anyone have experience with Jeffery Rumbaugh at s Hopkins? I would appreciate greatly any insights you might have. Geoff Albertson Oakland, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Geoff,She sounds septic (especially having had a uti) but I'm sure they have checked this out...I see a dr at s Hopkins but have never heard of Rumbaugh (is he a pulmonologist?). My dr there is a lung dr. Take care,Beckyalbertsoni2003 wrote: Hello. I'm not an actual sufferer, but am primary caregiver for my best friend--a 55-year old woman who has been diagnosed with the illness. I need help: my friend has been in hopsital in Oakland, Ca. since Sept 1st. She was admitted with a urinary tract infection-- which was treated and cured withn a few days. The thing is she continues to decline. Her speech and small motor functions are affected and she is nearly helpless--despite being back on iv solumedrol and undergoing blood pharysis. The past couple of days, her hands have become rigid and her mouth is not working very well. I spoke this evening with her neurologist- -who is a personal friend--and he simply doesn't know what is causing this--or what to do. My question is: is there ANYone doing CNS sarcoid work on the West Coast? (Dr. Sharma--USC?--seems to be only a lung guy.) If not, does anyone have experience with Jeffery Rumbaugh at s Hopkins? I would appreciate greatly any insights you might have. Geoff Albertson Oakland, CA All-new Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Geoff,One other question is whether she is taking any neuroleptic medications...these meds can cause a syndrome that sounds familiar to what you are describing.BeckyMac Tosh wrote: Geoff,She sounds septic (especially having had a uti) but I'm sure they have checked this out...I see a dr at s Hopkins but have never heard of Rumbaugh (is he a pulmonologist?). My dr there is a lung dr. Take care,Beckyalbertsoni2003 <gpalbert (AT) msn (DOT) com> wrote: Hello. I'm not an actual sufferer, but am primary caregiver for my best friend--a 55-year old woman who has been diagnosed with the illness. I need help: my friend has been in hopsital in Oakland, Ca. since Sept 1st. She was admitted with a urinary tract infection-- which was treated and cured withn a few days. The thing is she continues to decline. Her speech and small motor functions are affected and she is nearly helpless--despite being back on iv solumedrol and undergoing blood pharysis. The past couple of days, her hands have become rigid and her mouth is not working very well. I spoke this evening with her neurologist- -who is a personal friend--and he simply doesn't know what is causing this--or what to do. My question is: is there ANYone doing CNS sarcoid work on the West Coast? (Dr. Sharma--USC?--seems to be only a lung guy.) If not, does anyone have experience with Jeffery Rumbaugh at s Hopkins? I would appreciate greatly any insights you might have. Geoff Albertson Oakland, CA All-new Yahoo! Mail - Fire up a more powerful email and get things done faster. Stay in the know. Pulse on the new Yahoo.com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 Are they sure she does not have Guillain-Barré syndrome? I will try to attach a link about it. Check it out and see if it doesn't sound a lot like her symptoms. http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm Hope this helps. - > > Hello. I'm not an actual sufferer, but am primary caregiver for my > best friend--a 55-year old woman who has been diagnosed with the > illness. > > I need help: my friend has been in hopsital in Oakland, Ca. > since Sept 1st. She was admitted with a urinary tract infection-- > which was treated and cured withn a few days. The thing is she > continues to decline. Her speech and small motor functions are > affected and she is nearly helpless--despite being back on iv > solumedrol and undergoing blood pharysis. > > The past couple of days, her hands have become rigid and her mouth > is not working very well. I spoke this evening with her neurologist- > -who is a personal friend--and he simply doesn't know what is > causing this--or what to do. > > My question is: is there ANYone doing CNS sarcoid work on the West > Coast? (Dr. Sharma--USC?--seems to be only a lung guy.) > > If not, does anyone have experience with Jeffery Rumbaugh at s > Hopkins? > > I would appreciate greatly any insights you might have. > > Geoff Albertson > Oakland, CA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 ,This is a great article. My brother had GB when he was around 12. He had a vaccination a couple of days prior and one morning he was walking to school and just collapsed. This was back in the "iron lung" days and he was placed in one for months b/c couldn't breathe on his own. He was paralyised (oops, spelling but can'r backspace b/c keyboard messed up!) for over a year. I bet if we all looked at our family hx we would find all kinds of autoimmune stuff.. .take care, Becky wendy_cidp wrote: Are they sure she does not have Guillain-Barré syndrome? I will try to attach a link about it. Check it out and see if it doesn't sound a lot like her symptoms. http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm Hope this helps. - > > Hello. I'm not an actual sufferer, but am primary caregiver for my > best friend--a 55-year old woman who has been diagnosed with the > illness. > > I need help: my friend has been in hopsital in Oakland, Ca. > since Sept 1st. She was admitted with a urinary tract infection-- > which was treated and cured withn a few days. The thing is she > continues to decline. Her speech and small motor functions are > affected and she is nearly helpless--despite being back on iv > solumedrol and undergoing blood pharysis. > > The past couple of days, her hands have become rigid and her mouth > is not working very well. I spoke this evening with her neurologist- > -who is a personal friend--and he simply doesn't know what is > causing this--or what to do. > > My question is: is there ANYone doing CNS sarcoid work on the West > Coast? (Dr. Sharma--USC?--seems to be only a lung guy.) > > If not, does anyone have experience with Jeffery Rumbaugh at s > Hopkins? > > I would appreciate greatly any insights you might have. > > Geoff Albertson > Oakland, CA > How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.