Guest guest Posted September 8, 2005 Report Share Posted September 8, 2005 > >We saw his quack of a fellow, Parikh. He was > >awful and said he did examination he didn't. > ***** You are not the only one who doesn't care for Dr. Cohen's > fellow. I am sorry that Dr. Parikh isn't as good as Dr. Cohen. Oh my gosh, this is who they said I would see if I went to Cleveland. They said that Dr Cohen had hand picked him, and that he's good. I'm sure glad I read this. Atlanta is much farther, but if I'm going out of state, I want the trip to accomplish something. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2005 Report Share Posted September 8, 2005 --- klaga5 klaga5@...> wrote: > Oh my gosh, this is who they said I would see if I > went to Cleveland. > They said that Dr Cohen had hand picked him, and > that he's good. This is the party line. But, I would not see him. I'm a nurse so I do recognize a good exam when I see one. He didn't do one. Took 45 minutes to get history and exam of two children. Said he did things he didn't do. Lots of inaccuracies t hat are important. For example, he said he tested cranial nerves and he didn't (but I marveled that the neuro opthomologist did), he said there was no history of problems with anesthesia and both children have had apnea, said that there is no history of bleeding problems ( has low von Willebrand factor and has GI bleeds and a dx of von Willebrand and has low normal von Willebrand factor and always looks beaten), etc. Most importantly, he said that my kids couldn't have mito because they are not MR or DD and then diagnosed my son as DD. He promised to do a fresh muscle biopsy and then refused. The problem is that unless you have a recognized genetic defect or have some really obvious mito disorder, you're unlikely to be helped by Parikh. I'd be surprised if you aren't hurt by him. There isn't follow up with either Cohen or Shoffner. That's why we chose Whiteman and now.......... Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie ______________________________________________________ Click here to donate to the Hurricane Katrina relief effort. http://store.yahoo.com/redcross-donate3/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2005 Report Share Posted September 8, 2005 Ann-Marie and Kim Dr. Shoffner is following patients, although I don't know how many he sees and how many new ones he adds to his load. I know he didn't follow patients when I saw him, but is suppose to be seeing them now. laurie > > > Hi Kim, > > What part in your health care will Dr. Parikh be taking care of? Is > he going to be in charge of your muscle biopsy? Or will he be > following you and your disease? > > Even if you go to Dr. Shoffner for the muscle biopsy, he doesn't > follow you. You would have to find another doctor to follow you and > have a treatment plan for you. The last time i heard was that Dr. S > is not following patients like the other Mito docs. Although I could > be wrong, and I am sure that if I am someone on the list will let me > know and correct me. > > And let me just say that just because a few people didn't care for > Dr.P that doesn't mean he isn't a good Mito Doc. Not everyone agrees > on doctors. You may very well like Dr. Parikh very much. Each of us > is different and we look for different things when we go to doctors. > So before you get all upset and change your plans around you might > want to talk to some more people who have either seen him, or use him > as their Mito doctor. I personally can't say anything about the man > since I have never had an appointment with him or even met him. I > only said that I heard of others who did not care for him. I am sorry > if I got you all upset. > > Hugs, > Ann-Marie > > > > > > At 10:46 PM 9/8/2005, you wrote: > > > > >We saw his quack of a fellow, Parikh. He was > > > >awful and said he did examination he didn't. > > > > > ***** You are not the only one who doesn't care for Dr. Cohen's > > > fellow. I am sorry that Dr. Parikh isn't as good as Dr. Cohen. > > > >Oh my gosh, this is who they said I would see if I went to Cleveland. > >They said that Dr Cohen had hand picked him, and that he's good. I'm > >sure glad I read this. Atlanta is much farther, but if I'm going out > >of state, I want the trip to accomplish something. > >Kim > > > > > > > > > >Medical advice, information, opinions, data and statements contained > >herein are not necessarily those of the list moderators. The author > >of this e mail is entirely responsible for its content. List members > >are reminded of their responsibility to evaluate the content of the > >postings and consult with their physicians regarding changes in > >their own treatment. > > > >Personal attacks are not permitted on the list and anyone who sends > >one is automatically moderated or removed depending on the severity > >of the attack. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2005 Report Share Posted September 8, 2005 Hi Laurie, I thought I heard that he was only following a limited number of patients, and a person I was speaking to not long ago had a muscle biopsy done by him (positive results) but he told her he wasn't following any more patients. I guess it would depend on his work load and maybe he follows the more interesting Mito patients. Thanks for clearing that up for me. So maybe Kim will be able to have Dr. S follow her. Hugs, Ann-Marie At 11:18 PM 9/8/2005, you wrote: >Ann-Marie and Kim > >Dr. Shoffner is following patients, although I don't know how many he >sees and how many new ones he adds to his load. I know he didn't >follow patients when I saw him, but is suppose to be seeing them now. > >laurie -- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.344 / Virus Database: 267.10.19/93 - Release Date: 9/8/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2005 Report Share Posted September 8, 2005 I'm not upset. > > > > >We saw his quack of a fellow, Parikh. He was > > > >awful and said he did examination he didn't. > > > > > ***** You are not the only one who doesn't care for Dr. Cohen's > > > fellow. I am sorry that Dr. Parikh isn't as good as Dr. Cohen. > > > >Oh my gosh, this is who they said I would see if I went to Cleveland. > >They said that Dr Cohen had hand picked him, and that he's good. I'm > >sure glad I read this. Atlanta is much farther, but if I'm going out > >of state, I want the trip to accomplish something. > >Kim > > > > > > > > > >Medical advice, information, opinions, data and statements contained > >herein are not necessarily those of the list moderators. The author > >of this e mail is entirely responsible for its content. List members > >are reminded of their responsibility to evaluate the content of the > >postings and consult with their physicians regarding changes in > >their own treatment. > > > >Personal attacks are not permitted on the list and anyone who sends > >one is automatically moderated or removed depending on the severity > >of the attack. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2005 Report Share Posted September 8, 2005 oh good!!! At 11:35 PM 9/8/2005, you wrote: >I'm not upset. -- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.344 / Virus Database: 267.10.19/93 - Release Date: 9/8/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 There was a note on my (negative) genetic testing results from Dr. Shoffner that said he would be happy to see me as a follow-up, granted that isn't the same as regular care. Dr. Shoffner doesn't " do " the muscle biopsy, mine was done by a pediatric neurosurgeon he suggested. If I was local to Atlanta, I would keep him as my main doctor if at all possible. I understand he definitely follows up children, but much fewer adults. Take care, RH > > > > >We saw his quack of a fellow, Parikh. He was > > > >awful and said he did examination he didn't. > > > > > ***** You are not the only one who doesn't care for Dr. Cohen's > > > fellow. I am sorry that Dr. Parikh isn't as good as Dr. Cohen. > > > >Oh my gosh, this is who they said I would see if I went to Cleveland. > >They said that Dr Cohen had hand picked him, and that he's good. I'm > >sure glad I read this. Atlanta is much farther, but if I'm going out > >of state, I want the trip to accomplish something. > >Kim > > > > > > > > > >Medical advice, information, opinions, data and statements contained > >herein are not necessarily those of the list moderators. The author > >of this e mail is entirely responsible for its content. List members > >are reminded of their responsibility to evaluate the content of the > >postings and consult with their physicians regarding changes in > >their own treatment. > > > >Personal attacks are not permitted on the list and anyone who sends > >one is automatically moderated or removed depending on the severity > >of the attack. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 As I just posted, Dr. S at least offered to see me for a follow-up, I don't know where it would go from there (I just got my results in July). I am going to NEMC in Boston, to Dr. Korson's colleague Dr. Garganta, and I expect to see them once or twice per year. I see my MDA mito doc about three times per year now. Take care, RH > >Ann-Marie and Kim > > > >Dr. Shoffner is following patients, although I don't know how many he > >sees and how many new ones he adds to his load. I know he didn't > >follow patients when I saw him, but is suppose to be seeing them now. > > > >laurie > > > -- > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.344 / Virus Database: 267.10.19/93 - Release Date: 9/8/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 RH When I had my biopsy, before yours, he did it himself. I know that is not the case now, but was. laurie > As I just posted, Dr. S at least offered to see me for a follow-up, I > don't know where it would go from there (I just got my results in > July). > > I am going to NEMC in Boston, to Dr. Korson's colleague Dr. Garganta, > and I expect to see them once or twice per year. I see my MDA mito > doc about three times per year now. > > Take care, > RH > > > > > >Ann-Marie and Kim > > > > > >Dr. Shoffner is following patients, although I don't know how many > he > > >sees and how many new ones he adds to his load. I know he didn't > > >follow patients when I saw him, but is suppose to be seeing them > now. > > > > > >laurie > > > > > > -- > > No virus found in this outgoing message. > > Checked by AVG Anti-Virus. > > Version: 7.0.344 / Virus Database: 267.10.19/93 - Release Date: > 9/8/2005 > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 Oh, okay, I think you mentioned your muscle biopsy with him was in the 90's? BTW, how old do you think he is/was? Take care, RH > > > >Ann-Marie and Kim > > > > > > > >Dr. Shoffner is following patients, although I don't know how many > > he > > > >sees and how many new ones he adds to his load. I know he didn't > > > >follow patients when I saw him, but is suppose to be seeing them > > now. > > > > > > > >laurie > > > > > > > > > -- > > > No virus found in this outgoing message. > > > Checked by AVG Anti-Virus. > > > Version: 7.0.344 / Virus Database: 267.10.19/93 - Release Date: > > 9/8/2005 > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 RH I know that he is older than he looks. I think he might be getting close to 50. laurie > Oh, okay, I think you mentioned your muscle biopsy with him was in > the 90's? BTW, how old do you think he is/was? > > Take care, > RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 Yeah, I think so. 'Course the leather jacket makes him look younger. My dad is almost 80, and most people mistake him for 60 or less. I'm weird, some people think I'm early 20's, others think I'm on the high side of 40 LOL - maybe it is the mito affecting me differently day to day. Take care, RH > > Oh, okay, I think you mentioned your muscle biopsy with him was in > > the 90's? BTW, how old do you think he is/was? > > > > Take care, > > RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 I'd call Shoffner's office myself if I were you, it wouldn't hurt. Can you believe he actually called me back *himself* to apologize for my genetic results being late? I felt I was so running out of time that I had my fresh muscle biopsy while I was pregnant... Eventually my muscle biopsy results led me to trying NADH, which is further down the mito cocktail list, and it works well for me, tg. BTW, what are MR and DD, sorry if that should be obvious... Take care, RH > > > Oh my gosh, this is who they said I would see if I > > went to Cleveland. > > They said that Dr Cohen had hand picked him, and > > that he's good. > > This is the party line. But, I would not see him. I'm > a nurse so I do recognize a good exam when I see one. > He didn't do one. Took 45 minutes to get history and > exam of two children. Said he did things he didn't do. > Lots of inaccuracies t hat are important. For example, > he said he tested cranial nerves and he didn't (but I > marveled that the neuro opthomologist did), he said > there was no history of problems with anesthesia and > both children have had apnea, said that there is no > history of bleeding problems ( has low von > Willebrand factor and has GI bleeds and a dx of von > Willebrand and has low normal von Willebrand > factor and always looks beaten), etc. > > Most importantly, he said that my kids couldn't have > mito because they are not MR or DD and then diagnosed > my son as DD. He promised to do a fresh muscle biopsy > and then refused. > > The problem is that unless you have a recognized > genetic defect or have some really obvious mito > disorder, you're unlikely to be helped by Parikh. I'd > be surprised if you aren't hurt by him. There isn't > follow up with either Cohen or Shoffner. That's why we > chose Whiteman and now.......... > > > > Mom to the two best kids in the world! > http://www.caringbridge.org/visit/thomasandkatie > > > > > ______________________________________________________ > Click here to donate to the Hurricane Katrina relief effort. > http://store.yahoo.com/redcross-donate3/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 Is Whiteman the one a mayo? He doesn't do fresh muscle biopsy though, does he? Kim > There isn't > follow up with either Cohen or Shoffner. That's why we > chose Whiteman and now.......... > > > > Mom to the two best kids in the world! > http://www.caringbridge.org/visit/thomasandkatie > > > > > ______________________________________________________ > Click here to donate to the Hurricane Katrina relief effort. > http://store.yahoo.com/redcross-donate3/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 Hi Kim, Dr. Whiteman WAS at Mayo. Many of us who were followed by him are now desperately trying to figure out what we are going to do. Dr. Whiteman is currently workign in the Pharma industry on the East Coast. I was led to believe he would be returning to clinical practice after he received his medical license in that State, but from what I've heard recently, I don't know if that is still true. It is true that Mayo does NOT do fresh muscle biopsies. They do, though, do complete RTC evaluation on skin fibroblasts. If the skin fibroblast study is postivie, then an individual may not need a muscle biopsy. A negative skin fibroblast study does NOT rule mito out, it is just a potential study that is less invasive. The up side is that a sklin biopsy can be done across the country and soem of the cells prepared and shipped to Mayo for analysis. The patietns doesn't have to travel. In the interim, many families in the Midwest have no idea where they are goign to end up going for care (mine included). My girls are rather complex medically. For the past three years their care has been " shared " . Every three months theyr have been evaluated at either Cleveland Clinic or Mayo. The schedule at CCF is too busy too accommodate visits every three months. So far, every option suggested has not been an option for our family (long story). We have been done a very familiar, difficult raod in regards to diagnosis and treatment. --- klaga5 klaga5@...> wrote: > Is Whiteman the one a mayo? He doesn't do fresh > muscle biopsy though, > does he? > Kim > > > There isn't > > follow up with either Cohen or Shoffner. That's > why we > > chose Whiteman and now.......... > > > > > > > > Mom to the two best kids in the world! > > http://www.caringbridge.org/visit/thomasandkatie > > > > > > > > > > > ______________________________________________________ > > Click here to donate to the Hurricane Katrina > relief effort. > > http://store.yahoo.com/redcross-donate3/ > > > Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 That sounds tough. I hope you find someone that will really understand their needs. Kim > > > Is Whiteman the one a mayo? He doesn't do fresh > > muscle biopsy though, > > does he? > > Kim > > > > > There isn't > > > follow up with either Cohen or Shoffner. That's > > why we > > > chose Whiteman and now.......... > > > > > > > > > > > > Mom to the two best kids in the world! > > > http://www.caringbridge.org/visit/thomasandkatie > > > > > > > > > > > > > > > > > > ______________________________________________________ > > > Click here to donate to the Hurricane Katrina > > relief effort. > > > http://store.yahoo.com/redcross-donate3/ > > > > > > > > > Joanne Kocourek (mom to , lies, and ) > visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
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