Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Becky, I hear what you are saying and agree, but the fact is if you are going to get through this disease on top, you have to shop and search for good doctors. Even when you do get a good one for some reason they don't want to believe sarc can do the things it does. Hopefully with time and education things will get better...Take care, Connie Whitaker wrote: I can't believe that doctors are still so ignorant as to patient relations in general and treating this disease. I have been seeing the same neuro for 4 years and have went to NS specialist in Birmingham and Atlanta. When I first started having problems 5 years ago, they saw the sarcoid inflamation near the brain stem. I have had consistently elevated ACE levels and all the normal symptoms.I was recently diagnosed with Meniere's so now the neuro is saying that maybe that was what it was all along which is pure BS. What explains the elevated ACE, difficulty walking, fatigue, neuropathy, myclonus, etcc. I think they have run out of options so they are just going to see how the ENT does with the Meniere's.Reading about the treatment you are receiving also makes me mad. We all need patient advocates. I for one do not have the patience, energy, time, or money to shop for doctors or to do all the struggling involved. I know there are a lot of websites with information, but is anyone doing anything to actually assist patients? Becky_______________________________________________Join Excite! - http://www.excite.comThe most personalized portal on the Web! Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Becky, I hear what you are saying and agree, but the fact is if you are going to get through this disease on top, you have to shop and search for good doctors. Even when you do get a good one for some reason they don't want to believe sarc can do the things it does. Hopefully with time and education things will get better...Take care, Connie Whitaker wrote: I can't believe that doctors are still so ignorant as to patient relations in general and treating this disease. I have been seeing the same neuro for 4 years and have went to NS specialist in Birmingham and Atlanta. When I first started having problems 5 years ago, they saw the sarcoid inflamation near the brain stem. I have had consistently elevated ACE levels and all the normal symptoms.I was recently diagnosed with Meniere's so now the neuro is saying that maybe that was what it was all along which is pure BS. What explains the elevated ACE, difficulty walking, fatigue, neuropathy, myclonus, etcc. I think they have run out of options so they are just going to see how the ENT does with the Meniere's.Reading about the treatment you are receiving also makes me mad. We all need patient advocates. I for one do not have the patience, energy, time, or money to shop for doctors or to do all the struggling involved. I know there are a lot of websites with information, but is anyone doing anything to actually assist patients? Becky_______________________________________________Join Excite! - http://www.excite.comThe most personalized portal on the Web! Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 , I don't know if you've heard of doulas. They are women (usually) who provide labor support and sometimes help at home after delivery. They are advocates for the woman and her family. Once when I had an appt coming up with my neuro, I told a nurse friend that I needed an appt. doula, to be my advocate. She volunteered! After that she went to several appts & not only made sure that all my questions were addressed, but also was able to tell him how different I was before I got sick. I recommend finding someone like this. They don't have to be a medical person; persistence & a fearless spirit are more important! Maybe I'll work on a job description, with sample questions, etc. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: doctorsDate: Fri, 12 May 2006 08:45:12 -0400 (EDT)I can't believe that doctors are still so ignorant as to patient relations in general and treating this disease. I have been seeing the same neuro for 4 years and have went to NS specialist in Birmingham and Atlanta. When I first started having problems 5 years ago, they saw the sarcoid inflamation near the brain stem. I have had consistently elevated ACE levels and all the normal symptoms. I was recently diagnosed with Meniere's so now the neuro is saying that maybe that was what it was all along which is pure BS. What explains the elevated ACE, difficulty walking, fatigue, neuropathy, myclonus, etcc. I think they have run out of options so they are just going to see how the ENT does with the Meniere's. Reading about the treatment you are receiving also makes me mad. We all need patient advocates. I for one do not have the patience, energy, time, or money to shop for doctors or to do all the struggling involved. I know there are a lot of websites with information, but is anyone doing anything to actually assist patients? Becky_______________________________________________Join Excite! - http://www.excite.comThe most personalized portal on the Web!~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 , I don't know if you've heard of doulas. They are women (usually) who provide labor support and sometimes help at home after delivery. They are advocates for the woman and her family. Once when I had an appt coming up with my neuro, I told a nurse friend that I needed an appt. doula, to be my advocate. She volunteered! After that she went to several appts & not only made sure that all my questions were addressed, but also was able to tell him how different I was before I got sick. I recommend finding someone like this. They don't have to be a medical person; persistence & a fearless spirit are more important! Maybe I'll work on a job description, with sample questions, etc. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: doctorsDate: Fri, 12 May 2006 08:45:12 -0400 (EDT)I can't believe that doctors are still so ignorant as to patient relations in general and treating this disease. I have been seeing the same neuro for 4 years and have went to NS specialist in Birmingham and Atlanta. When I first started having problems 5 years ago, they saw the sarcoid inflamation near the brain stem. I have had consistently elevated ACE levels and all the normal symptoms. I was recently diagnosed with Meniere's so now the neuro is saying that maybe that was what it was all along which is pure BS. What explains the elevated ACE, difficulty walking, fatigue, neuropathy, myclonus, etcc. I think they have run out of options so they are just going to see how the ENT does with the Meniere's. Reading about the treatment you are receiving also makes me mad. We all need patient advocates. I for one do not have the patience, energy, time, or money to shop for doctors or to do all the struggling involved. I know there are a lot of websites with information, but is anyone doing anything to actually assist patients? Becky_______________________________________________Join Excite! - http://www.excite.comThe most personalized portal on the Web!~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
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