Guest guest Posted October 15, 2004 Report Share Posted October 15, 2004 Ok,Ya'll, I am still trying to figure out this whole Dr thing. I called the Cleveland Clinic(no particular reason,,they were just first on my list) I was able to get an appointment with a Dr Schafer,(metabolic geneticist)set for Nov 17,,but I panicked and had them move it back a bit,to Dec 1. It just seemed to move too fast,,and I just kinda had a panic attack,,wondering if I am really ready to hear the news that I might hear,,crazy,I know. After I made the appointment,I researched a little bit more,and found out that Dr.Cohen is a neuro,at the Cleveland Clinic,,and his specialty is mito disorders. Soooo,,now I am a little stumped as to what to do. I tried to call Dr.Cohen's office,but they were already closed,,so I will try again tomorrow. I am thinking that maybe I should see if I can see both Dr's while we are in Cleveland. I'm not sure if that would be possible. Has anyone had any experience with either of these Dr's ? Also,,when you are going to see another Dr,,what kinds of records do you take ? I mean,,do I take everything ?(Like,from all the Dr's that he has seen,,rheumatologist,dev ped,psychologist,OT,ST,PT,endo,neuro,ortho,,etc) ANd how long do you usually have to stay ? Thanks Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY ________________________________________________________________ Speed up your surfing with Juno SpeedBand. Now includes pop-up blocker! Only $14.95/ month - visit http://www.juno.com/surf to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2004 Report Share Posted October 15, 2004 Kim I personally think Dr Shoffner is THE guy to get a diagnosis from. Dr Cohen even said that in 2002 when they lectured together. Used to be that Cohen managed patients too so that was the advantage of seeing him over Shoffner, but now he only dxes also. Shoffner is a mito specialist too...he just doens't see patients beyond dx. Everything Shoffner does runs smoothly b/c they have been doing the dxing for so long. Everyone refers to the workup as the 'shoffner special' knowing what to do about anesthesia and mito protocol. Shoffner will get you in much faster than Cohen and Cohen has been known to call you a day before you leave and reschedule your appt for months later. Not slamming him, but its been discussed many times on this board and I know families that had it happen to them personally. Cohen gives you a verbal or emailed preliminary report within a few weeks...Shoffner's results come in the mail, in about a 40 page packet in about three months. Cohen never sends a written packet unless you ask and I know some friends have had a hard time getting them. For Shoffner, they mail you the notes from your visit within a week of getting home and everything there is SOP. Shoffner wont take you unless he feels pretty strongly that he can help you find a dx. Shoffner tends to find more specific dxs than just unspecified mito. I only know of two families that didn't get a firm diagnosis from seeing him. In those cases, he had to look at the clinical picture. Cohen takes Medicaid and Shoffner doesn't. Where do you live? Mayo clinic in Mn and Dr Korson in Mass are both great at managing mito but don't do fresh muscle biopsies. Mayo will do a frozen there (although I think if you are going to have one, do a fresh.) Korson would send you to Shoffner. There is also a doc at CHOP who used to work with Mayo mito docs and know a lot. I would go Shoffner (I always say that) and then find a doc to manage...either in your hometown that you feel it up to the job or one of the other docs people are using. deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy. www.LifeofLoveProject.orgwww.HeartLiftersGallery.comCrazy Lizzies!! PURSES! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2004 Report Share Posted October 15, 2004 I am unfamiliar with the other doctors, but we see Cohen at CCF for Grace. It is true that he specializes in Mito, and he is one of the top doctors in the Country for Mito. You may want to try to get in with him in December, but don't expect too much. Since he is so well known, and there are so few " mito specialists " his schedule is terrible. It is very common to wait 6 months upwards to a year for an appointment. My best suggestion would be to have your pediatrician call his office requesting an appointment. If you call the receptionists will only put you on a waiting list. Also Cohen is no longer able to take " new patients " for treatment. He is only able to diagnose mito with his new patients. Please don't get discouraged with all this info. This is the only frustrating part of seeing Cohen. He is a great doctor, and very caring. He was so great in trying to get Gracie diagnosed and treated as soon as possible. We honestly believe that if we did not have Cohen when we did, we would not have had Gracie for very long. _________________________________________________________________ FREE pop-up blocking with the new MSN Toolbar – get it now! http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2008 Report Share Posted January 28, 2008 Here is the site address for The Cleveland Clinic for Excelence in Sarcoidosis. I believe this is where Dr. Baughman practices. http://cms.clevelandclinic.org/body.cfm?xyzpdqabc=0 & id=227 & action=detail & ref=45 Start the year off right. Easy ways to stay in shape in the new year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2008 Report Share Posted January 28, 2008 Here is the site address for The Cleveland Clinic for Excelence in Sarcoidosis. I believe this is where Dr. Baughman practices. http://cms.clevelandclinic.org/body.cfm?xyzpdqabc=0 & id=227 & action=detail & ref=45 Start the year off right. Easy ways to stay in shape in the new year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2008 Report Share Posted January 28, 2008 Hi Tracie, I searched the site and Dr. Baughman's name does not come up anymore under sarcoidosis, they have a lady doctor now. was he old enough to retire? we did send in the appeal, along with a pretty convincing letter from my Neuro, my husband says we just need to keep sending information in to support our case as long as we can, I believe he/or i will draft a letter to Dr. Sharma too, see if he will be interested in writing a letter for our case? oh well, God is keeping me down, as we have car problems big time, so my car is now the " boys " car so to speak, between their work and school schedule I don't get much time with it, so it's not my fault when there's nothing here to ear! hope you are doing well, thank you for all the help, i so appreciate you Tracie. Marla Here is the site address for The Cleveland Clinic for Excelence in Sarcoidosis. I believe this is where Dr. Baughman practices. http://cms.clevelandclinic.org/body.cfm?xyzpdqabc=0 & id=227 & action=detail & ref=45 Start the year off right. Easy ways to stay in shape in the new year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2008 Report Share Posted January 28, 2008 Hi Tracie, I searched the site and Dr. Baughman's name does not come up anymore under sarcoidosis, they have a lady doctor now. was he old enough to retire? we did send in the appeal, along with a pretty convincing letter from my Neuro, my husband says we just need to keep sending information in to support our case as long as we can, I believe he/or i will draft a letter to Dr. Sharma too, see if he will be interested in writing a letter for our case? oh well, God is keeping me down, as we have car problems big time, so my car is now the " boys " car so to speak, between their work and school schedule I don't get much time with it, so it's not my fault when there's nothing here to ear! hope you are doing well, thank you for all the help, i so appreciate you Tracie. Marla Here is the site address for The Cleveland Clinic for Excelence in Sarcoidosis. I believe this is where Dr. Baughman practices. http://cms.clevelandclinic.org/body.cfm?xyzpdqabc=0 & id=227 & action=detail & ref=45 Start the year off right. Easy ways to stay in shape in the new year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2008 Report Share Posted January 28, 2008 Dr Baughman is in Cincinnati at University hospital. That's where I go. Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2008 Report Share Posted January 28, 2008 Dr Baughman is in Cincinnati at University hospital. That's where I go. Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 Hello Marla: I am new to your group as of today. I have been to Dr Baughman a few years ago. He practices out of the Barrett Center in Cincinnati, Oh attached to the University of Cinicinnati Hospital. He is known to be the expert here on sarc. I see a pulmonary doctor in my group now. His phone number. I was diagnosed several years ago with sarc affecting my lungs but now I am having some other symptoms and hope to learn about Neuro sarc from others here. Hope this helps you. Deborah -- In Neurosarcoidosis , " Marla Bramer " wrote: > > Hi Tracie, > I searched the site and Dr. Baughman's name does not come up anymore under > sarcoidosis, they have a lady doctor now. was he old enough to retire? > we did send in the appeal, along with a pretty convincing letter from my > Neuro, my husband says we just need to keep sending information in to > support our case as long as we can, I believe he/or i will draft a letter to > Dr. Sharma too, see if he will be interested in writing a letter for our > case? > oh well, God is keeping me down, as we have car problems big time, so my car > is now the " boys " car so to speak, between their work and school schedule I > don't get much time with it, so it's not my fault when there's nothing here > to ear! hope you are doing well, thank you for all the help, i so > appreciate you Tracie. Marla > > > > > ** > > > > *Here is the site address for The Cleveland Clinic for Excelence in > > Sarcoidosis. I believe this is where Dr. Baughman practices.* > > > > * > > http://cms.clevelandclinic.org/body.cfm? xyzpdqabc=0 & id=227 & action=detail & ref=45 > > * > > > > > > > > ------------------------------ > > Start the year off right. Easy ways to stay in shape<http://body.aol.com/fitness/winter-exercise? NCID=aolcmp00300000002489>in the new year. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 Hello Marla: I am new to your group as of today. I have been to Dr Baughman a few years ago. He practices out of the Barrett Center in Cincinnati, Oh attached to the University of Cinicinnati Hospital. He is known to be the expert here on sarc. I see a pulmonary doctor in my group now. His phone number. I was diagnosed several years ago with sarc affecting my lungs but now I am having some other symptoms and hope to learn about Neuro sarc from others here. Hope this helps you. Deborah -- In Neurosarcoidosis , " Marla Bramer " wrote: > > Hi Tracie, > I searched the site and Dr. Baughman's name does not come up anymore under > sarcoidosis, they have a lady doctor now. was he old enough to retire? > we did send in the appeal, along with a pretty convincing letter from my > Neuro, my husband says we just need to keep sending information in to > support our case as long as we can, I believe he/or i will draft a letter to > Dr. Sharma too, see if he will be interested in writing a letter for our > case? > oh well, God is keeping me down, as we have car problems big time, so my car > is now the " boys " car so to speak, between their work and school schedule I > don't get much time with it, so it's not my fault when there's nothing here > to ear! hope you are doing well, thank you for all the help, i so > appreciate you Tracie. Marla > > > > > ** > > > > *Here is the site address for The Cleveland Clinic for Excelence in > > Sarcoidosis. I believe this is where Dr. Baughman practices.* > > > > * > > http://cms.clevelandclinic.org/body.cfm? xyzpdqabc=0 & id=227 & action=detail & ref=45 > > * > > > > > > > > ------------------------------ > > Start the year off right. Easy ways to stay in shape<http://body.aol.com/fitness/winter-exercise? NCID=aolcmp00300000002489>in the new year. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2008 Report Share Posted February 17, 2008 Deborah, Thank you for this information, I am so behind in emails I started with the new and went back, so here I am just getting to you, I'm sorry, and really appreciate any information, Thank you. Hope you are getting what you need from us here too. Marla Hello Marla: I am new to your group as of today. I have been to Dr Baughman a few years ago. He practices out of the Barrett Center in Cincinnati, Oh attached to the University of Cinicinnati Hospital. He is known to be the expert here on sarc. I see a pulmonary doctor in my group now. His phone number. I was diagnosed several years ago with sarc affecting my lungs but now I am having some other symptoms and hope to learn about Neuro sarc from others here. Hope this helps you. Deborah -- In Neurosarcoidosis , " Marla Bramer " wrote: > > Hi Tracie, > I searched the site and Dr. Baughman's name does not come up anymore under > sarcoidosis, they have a lady doctor now. was he old enough to retire? > we did send in the appeal, along with a pretty convincing letter from my > Neuro, my husband says we just need to keep sending information in to > support our case as long as we can, I believe he/or i will draft a letter to > Dr. Sharma too, see if he will be interested in writing a letter for our > case? > oh well, God is keeping me down, as we have car problems big time, so my car > is now the " boys " car so to speak, between their work and school schedule I > don't get much time with it, so it's not my fault when there's nothing here > to ear! hope you are doing well, thank you for all the help, i so > appreciate you Tracie. Marla > > > > > ** > > > > *Here is the site address for The Cleveland Clinic for Excelence in > > Sarcoidosis. I believe this is where Dr. Baughman practices.* > > > > * > > http://cms.clevelandclinic.org/body.cfm? xyzpdqabc=0 & id=227 & action=detail & ref=45 > > * > > > > > > > > ------------------------------ > > Start the year off right. Easy ways to stay in shape<http://body.aol.com/fitness/winter-exercise? NCID=aolcmp00300000002489>in the new year. > > > > > > > -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
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