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Re: buccal swab testing

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  • mitoakl
    We were called exactly one week from testing. My son s matched exactly to his muscle biopsy results. My daughter who we assumed based on symptoms (we are not
    Message 1 of 23 , Dec 1, 2009
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      We were called exactly one week from testing. My son's matched exactly to his muscle biopsy results. My daughter who we assumed based on symptoms (we are not going to biopsy her) showed a lower level of what Alex's did. He did me as well and while mine was "normal" it was on the lowest level of normal you can be. He is retesting both my daughter and me. Give him a call if you haven't received your results. he did say that he has been having huge numbers come in. He is the only guy in the lab.

      ~Katie
      Alex 6 yrs and Lauren 2 yrs (both with mito)
      www.caringbridge.org/visit/alexanderlindemann


      --- In Mito@yahoogroups.com, Tammy Martin <dtmartin628@...> wrote:
      >
      > Hi Everyone,
      >  
      > I am hoping that everyone had a great holiday weekend.
      >  
      > I have a quick question to those of you who have taken part in the St Christopher's Buccal swab study for Mito...how long did it take you to get your results?
      >  
      > Thanks in advance,
      > Tammy
      >
    • Meagan
      For the buccal swab testing do you have to go to the center where it is being done or can you have your physician send a swab to them?  Also, I seem to have
      Message 2 of 23 , Dec 1, 2009
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        For the buccal swab testing do you have to go to the center where it is being done or can you have your physician send a swab to them?  Also, I seem to have lost the contact info for this doc/facility.  Does anyone still have it?

        Meagan (mom)
        Alison, 12, Asperger's
        Sophia, 5, Mito


        --- On Tue, 12/1/09, mitoakl <skl304@...> wrote:

        From: mitoakl <skl304@...>
        Subject: [Mito] Re: buccal swab testing
        To: Mito@yahoogroups.com
        Date: Tuesday, December 1, 2009, 5:47 AM


        We were called exactly one week from testing.  My son's matched exactly to his muscle biopsy results. My daughter who we assumed based on symptoms (we are not going to biopsy her) showed a lower level of what Alex's did.  He did me as well and while mine was "normal" it was on the lowest level of normal you can be.  He is retesting both my daughter and me.  Give him a call if you haven't received your results.  he did say that he has been having huge numbers come in.  He is the only guy in the lab. 

        ~Katie
        Alex 6 yrs and Lauren 2 yrs (both with mito)
        www.caringbridge.org/visit/alexanderlindemann


        --- In Mito@yahoogroups.com, Tammy Martin <dtmartin628@...> wrote:
        >
        > Hi Everyone,
        >  
        > I am hoping that everyone had a great holiday weekend.
        >  
        > I have a quick question to those of you who have taken part in the St Christopher's Buccal swab study for Mito...how long did it take you to get your results?
        >  
        > Thanks in advance,
        > Tammy
        >




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      • Katiebear
        It was for a doc at St Christopher s For Children in Philadelphia. I don t remember the info either but I know I had contacted him twice and didn t hear a
        Message 3 of 23 , Dec 1, 2009
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          It was for a doc at St Christopher's For Children in Philadelphia. I don't remember the info either but I know I had contacted him twice and didn't hear a thing about doing the test so I'm assuming they weren't taking any more requests.

          --- In Mito@yahoogroups.com, Meagan <tooge01@...> wrote:
          >
          > For the buccal swab testing do you have to go to the center where it is being done or can you have your physician send a swab to them?  Also, I seem to have lost the contact info for this doc/facility.  Does anyone still have it?
          >
          >
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          > Meagan (mom)
          > Alison, 12, Asperger's
          > Sophia, 5, Mito
          > www.caringbridge.com/visit/sophiaochsner
          >
          > --- On Tue, 12/1/09, mitoakl <skl304@...> wrote:
          >
          >
          > From: mitoakl <skl304@...>
          > Subject: [Mito] Re: buccal swab testing
          > To: Mito@yahoogroups.com
          > Date: Tuesday, December 1, 2009, 5:47 AM
          >
          >
          >
          > We were called exactly one week from testing.  My son's matched exactly to his muscle biopsy results. My daughter who we assumed based on symptoms (we are not going to biopsy her) showed a lower level of what Alex's did.  He did me as well and while mine was "normal" it was on the lowest level of normal you can be.  He is retesting both my daughter and me.  Give him a call if you haven't received your results.  he did say that he has been having huge numbers come in.  He is the only guy in the lab. 
          >
          > ~Katie
          > Alex 6 yrs and Lauren 2 yrs (both with mito)
          > www.caringbridge.org/visit/alexanderlindemann
          >
          >
          > --- In Mito@yahoogroups.com, Tammy Martin <dtmartin628@> wrote:
          > >
          > > Hi Everyone,
          > >  
          > > I am hoping that everyone had a great holiday weekend.
          > >  
          > > I have a quick question to those of you who have taken part in the St Christopher's Buccal swab study for Mito...how long did it take you to get your results?
          > >  
          > > Thanks in advance,
          > > Tammy
          > >
          >
          >
          >
          >
          > ------------------------------------
          >
          > Please contact mito-owner@yahoogroups.com with any problems or questions.Yahoo! Groups Links
          >
        • Meagan Ochsner
          Thanks for letting me know. Meagan On Dec 1, 2009, at 2:07 PM, Katiebear wrote: It was for a doc at St Christopher s For Children
          Message 4 of 23 , Dec 1, 2009
          • 0 Attachment
            Thanks for letting me know.

            Meagan


            On Dec 1, 2009, at 2:07 PM, "Katiebear" <andnowtheres2@...> wrote:

            It was for a doc at St Christopher's For Children in Philadelphia. I don't remember the info either but I know I had contacted him twice and didn't hear a thing about doing the test so I'm assuming they weren't taking any more requests.

            --- In Mito@yahoogroups.com, Meagan <tooge01@...> wrote:

            For the buccal swab testing do you have to go to the center where it is being done or can you have your physician send a swab to them? Also, I seem to have lost the contact info for this doc/facility. Does anyone still have it?
























            Meagan (mom)
            Alison, 12, Asperger's
            Sophia, 5, Mito
            www.caringbridge.com/visit/sophiaochsner

            --- On Tue, 12/1/09, mitoakl <skl304@...> wrote:


            From: mitoakl <skl304@...>
            Subject: [Mito] Re: buccal swab testing
            To: Mito@yahoogroups.com
            Date: Tuesday, December 1, 2009, 5:47 AM



            We were called exactly one week from testing. My son's matched exactly to his muscle biopsy results. My daughter who we assumed based on symptoms (we are not going to biopsy her) showed a lower level of what Alex's did. He did me as well and while mine was "normal" it was on the lowest level of normal you can be. He is retesting both my daughter and me. Give him a call if you haven't received your results. he did say that he has been having huge numbers come in. He is the only guy in the lab.

            ~Katie
            Alex 6 yrs and Lauren 2 yrs (both with mito)
            www.caringbridge.org/visit/alexanderlindemann


            --- In Mito@yahoogroups.com, Tammy Martin <dtmartin628@> wrote:

            Hi Everyone,

            I am hoping that everyone had a great holiday weekend.

            I have a quick question to those of you who have taken part in the St Christopher's Buccal swab study for Mito...how long did it take you to get your results?

            Thanks in advance,
            Tammy





            ------------------------------------

            Please contact mito-owner@yahoogroups.com with any problems or questions.Yahoo! Groups Links





            ------------------------------------

            Please contact mito-owner@yahoogroups.com with any problems or questions.Yahoo! Groups Links
          • Rivera Family
            What complex does your kids have? I just mailed (overnight) our swabs... And was curious.. My daughter has complex1 and I am curous if it detects this specific
            Message 5 of 23 , Dec 1, 2009
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              What complex does your kids have? I just mailed (overnight) our swabs... And was curious.. My daughter has complex1 and I am curous if it detects this specific complex?
               

              God Bless,

              Rafael & Elicia Rivera

              www.sheltersonline.com




              From: mitoakl <skl304@...>
              To: Mito@yahoogroups.com
              Sent: Tue, December 1, 2009 5:47:47 AM
              Subject: [Mito] Re: buccal swab testing

               


              We were called exactly one week from testing. My son's matched exactly to his muscle biopsy results. My daughter who we assumed based on symptoms (we are not going to biopsy her) showed a lower level of what Alex's did. He did me as well and while mine was "normal" it was on the lowest level of normal you can be. He is retesting both my daughter and me. Give him a call if you haven't received your results. he did say that he has been having huge numbers come in. He is the only guy in the lab.

              ~Katie
              Alex 6 yrs and Lauren 2 yrs (both with mito)
              www.caringbridge. org/visit/ alexanderlindema nn

              --- In Mito@yahoogroups. com, Tammy Martin <dtmartin628@ ...> wrote:
              >
              > Hi Everyone,
              >  
              > I am hoping that everyone had a great holiday weekend.
              >  
              > I have a quick question to those of you who have taken part in the St Christopher' s Buccal swab study for Mito...how long did it take you to get your results?
              >  
              > Thanks in advance,
              > Tammy
              >


            • mitoakl
              Dr. Goldenthal is the doc at St. Chris. He most surely is taking more samples. Right now he is trying to prove that the buccal swab is as effective as a
              Message 6 of 23 , Dec 1, 2009
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                Dr. Goldenthal is the doc at St. Chris. He most surely is taking more samples. Right now he is trying to prove that the buccal swab is as effective as a muscle biopsy so he is really looking at only those who have had a full workup completed. He is very busy. He is the only doc in the lab. Email him at Michael.Goldenthal@...

                or call St. Christophor's hospital for Children in Philly and they will connect you to his voice mail.

                For those who asked. My kids have Complex I.

                ~Katie
                Alex 6yrs and Lauren 2 yrs (Both with mito)
                www.caringbridge.org/visit/alexanderlindemann


                --- In Mito@yahoogroups.com, Rivera Family <riverafamilygeorgia@...> wrote:
                >
                > What complex does your kids have? I just mailed (overnight) our swabs... And was curious.. My daughter has complex1 and I am curous if it detects this specific complex?
                >
                >
                > God Bless,
                > Rafael & Elicia Rivera
                > www.sheltersonline.com
                >
                >
                >
                >
                > ________________________________
                > From: mitoakl <skl304@...>
                > To: Mito@yahoogroups.com
                > Sent: Tue, December 1, 2009 5:47:47 AM
                > Subject: [Mito] Re: buccal swab testing
                >
                >
                >
                > We were called exactly one week from testing. My son's matched exactly to his muscle biopsy results. My daughter who we assumed based on symptoms (we are not going to biopsy her) showed a lower level of what Alex's did. He did me as well and while mine was "normal" it was on the lowest level of normal you can be. He is retesting both my daughter and me. Give him a call if you haven't received your results. he did say that he has been having huge numbers come in. He is the only guy in the lab.
                >
                > ~Katie
                > Alex 6 yrs and Lauren 2 yrs (both with mito)
                > www.caringbridge. org/visit/ alexanderlindema nn
                >
                > --- In Mito@yahoogroups. com, Tammy Martin <dtmartin628@ ...> wrote:
                > >
                > > Hi Everyone,
                > >
                > > I am hoping that everyone had a great holiday weekend.
                > >
                > > I have a quick question to those of you who have taken part in the St Christopher' s Buccal swab study for Mito...how long did it take you to get your results?
                > >
                > > Thanks in advance,
                > > Tammy
                > >
                >
              • matts_mom96
                Matt test results took 2 1/2 weeks, Dr. Goldenthal found complex 1 deficiency, and has taken 4 more swabs to see if he can identify the genetic component in
                Message 7 of 23 , Dec 1, 2009
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                  Matt test results took 2 1/2 weeks, Dr. Goldenthal found complex 1 deficiency, and has taken 4 more swabs to see if he can identify the genetic component in the cell, and also to recheck for complex 4, as usually complex 1 and 4 are found together in alot of mito children, he just wants to make sure he didnt miss anything. He is very thorough,and very nice. I didnt think of it at the time, not until mentioned here to see if he would swab me, as i too have mito. I was wondering are you from the philly area, we are in Norristown, near King of Prussia. its lonely out here, no one out here understands the complexity of this disease, even when you explain it to them. when ever me or Matt go to the ER, I have them notify my mito doc or for Matt, dr,Marks at St.Chris which is his mito doc. Other wise the ER doctor mise well act like our having mito wasnt even told to them. Its sad that it has to be explained everytime. i get sick of hearing mito what? and then they walk away uninterested anyway. hugs Barb
                • Rivera Family
                  I am in GA. My 9 yr old was dx via biopsy but the rest of us can not afford to be tested. I send the swabs via frozern overnight mail. I am hoping to get a dx
                  Message 8 of 23 , Dec 1, 2009
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                    I am in GA. My 9 yr old was dx via biopsy but the rest of us can not afford to be tested. I send the swabs via frozern overnight mail. I am hoping to get a dx for the ones of us who are not dx yet. But I also like helping research.
                     

                    God Bless,

                    Rafael & Elicia Rivera

                    www.sheltersonline.com




                    From: matts_mom96 <matts_mom96@...>
                    To: Mito@yahoogroups.com
                    Sent: Tue, December 1, 2009 11:19:33 PM
                    Subject: [Mito] Re: buccal swab testing

                     

                    Matt test results took 2 1/2 weeks, Dr. Goldenthal found complex 1 deficiency, and has taken 4 more swabs to see if he can identify the genetic component in the cell, and also to recheck for complex 4, as usually complex 1 and 4 are found together in alot of mito children, he just wants to make sure he didnt miss anything. He is very thorough,and very nice. I didnt think of it at the time, not until mentioned here to see if he would swab me, as i too have mito. I was wondering are you from the philly area, we are in Norristown, near King of Prussia. its lonely out here, no one out here understands the complexity of this disease, even when you explain it to them. when ever me or Matt go to the ER, I have them notify my mito doc or for Matt, dr,Marks at St.Chris which is his mito doc. Other wise the ER doctor mise well act like our having mito wasnt even told to them. Its sad that it has to be explained everytime. i get sick of hearing mito what? and then they walk away uninterested anyway. hugs Barb


                  • HEATHER EVANSSMITH
                    Barb, We live in Philly and see Dr. Marks as well. We are so new to this that so far we have not had any issues with people understanding Mito. We are still
                    Message 9 of 23 , Dec 2, 2009
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                      Barb,
                       
                      We live in Philly and see Dr. Marks as well. We are so new to this that so far we have not had any issues with people understanding Mito. We are still waiting to see if they will do a biopsy on Sarina.
                       
                      Heather
                      Mommy to:
                      Sarina-(Hodgkin's Survivor, CP, Spina Bifidai Occulta, Scoliosis, diabetes, ASD, Raynaud's, Failure To Thrive) & Elizabeth (diabetes) (11/8/96)
                      Breanna- (diabetes,Epilepsy,CP, heart murmur)(10/8/01)
                      http://www.caringbridge.org/pa/sarina/
                      ----- Original Message -----
                      Sent: Tuesday, December 01, 2009 11:19 PM
                      Subject: [Mito] Re: buccal swab testing

                       

                      Matt test results took 2 1/2 weeks, Dr. Goldenthal found complex 1 deficiency, and has taken 4 more swabs to see if he can identify the genetic component in the cell, and also to recheck for complex 4, as usually complex 1 and 4 are found together in alot of mito children, he just wants to make sure he didnt miss anything. He is very thorough,and very nice. I didnt think of it at the time, not until mentioned here to see if he would swab me, as i too have mito. I was wondering are you from the philly area, we are in Norristown, near King of Prussia. its lonely out here, no one out here understands the complexity of this disease, even when you explain it to them. when ever me or Matt go to the ER, I have them notify my mito doc or for Matt, dr,Marks at St.Chris which is his mito doc. Other wise the ER doctor mise well act like our having mito wasnt even told to them. Its sad that it has to be explained everytime. i get sick of hearing mito what? and then they walk away uninterested anyway. hugs Barb


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                    • TE
                      Is this only for those with confirmed cases of mito in the family? My daughter s been on a long diagnostic journey, with all roads leading nowhere, so to
                      Message 10 of 23 , Dec 2, 2009
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                        Is this only for those with confirmed cases of mito in the family? My daughter's been on a long diagnostic journey, with all roads leading nowhere, so to speak. Kinda getting desperate for answers!


                        --- In Mito@yahoogroups.com, "mitoakl" <skl304@...> wrote:
                        >
                        >
                        > We were called exactly one week from testing. My son's matched exactly to his muscle biopsy results. My daughter who we assumed based on symptoms (we are not going to biopsy her) showed a lower level of what Alex's did. He did me as well and while mine was "normal" it was on the lowest level of normal you can be. He is retesting both my daughter and me. Give him a call if you haven't received your results. he did say that he has been having huge numbers come in. He is the only guy in the lab.
                        >
                        > ~Katie
                        > Alex 6 yrs and Lauren 2 yrs (both with mito)
                        > www.caringbridge.org/visit/alexanderlindemann
                        >
                        >
                        > --- In Mito@yahoogroups.com, Tammy Martin <dtmartin628@> wrote:
                        > >
                        > > Hi Everyone,
                        > >  
                        > > I am hoping that everyone had a great holiday weekend.
                        > >  
                        > > I have a quick question to those of you who have taken part in the St Christopher's Buccal swab study for Mito...how long did it take you to get your results?
                        > >  
                        > > Thanks in advance,
                        > > Tammy
                        > >
                        >
                      • mitoakl
                        Barb, We live in the Lehigh Valley. Mito is frustrating in itself. Nobody knowing about it is even worse. Email me of site if you would like. ~Katie Alex 6
                        Message 11 of 23 , Dec 2, 2009
                        • 0 Attachment
                          Barb,

                          We live in the Lehigh Valley. Mito is frustrating in itself. Nobody knowing about it is even worse. Email me of site if you would like.

                          ~Katie
                          Alex 6 yrs and Lauren 2 yrs (both with mito)
                          www.caringbridge.org/visit/alexanderlindemann

                          --- In Mito@yahoogroups.com, "matts_mom96" <matts_mom96@...> wrote:
                          >
                          > Matt test results took 2 1/2 weeks, Dr. Goldenthal found complex 1 deficiency, and has taken 4 more swabs to see if he can identify the genetic component in the cell, and also to recheck for complex 4, as usually complex 1 and 4 are found together in alot of mito children, he just wants to make sure he didnt miss anything. He is very thorough,and very nice. I didnt think of it at the time, not until mentioned here to see if he would swab me, as i too have mito. I was wondering are you from the philly area, we are in Norristown, near King of Prussia. its lonely out here, no one out here understands the complexity of this disease, even when you explain it to them. when ever me or Matt go to the ER, I have them notify my mito doc or for Matt, dr,Marks at St.Chris which is his mito doc. Other wise the ER doctor mise well act like our having mito wasnt even told to them. Its sad that it has to be explained everytime. i get sick of hearing mito what? and then they walk away uninterested anyway. hugs Barb
                          >
                        • Katiebear
                          Thanks for posting this again!! I was able to get hold of him and he said my daughter would be a good candidate for his study.
                          Message 12 of 23 , Dec 2, 2009
                          • 0 Attachment
                            Thanks for posting this again!! I was able to get hold of him and he said my daughter would be a good candidate for his study.

                            --- In Mito@yahoogroups.com, "mitoakl" <skl304@...> wrote:
                            >
                            > Dr. Goldenthal is the doc at St. Chris. He most surely is taking more samples. Right now he is trying to prove that the buccal swab is as effective as a muscle biopsy so he is really looking at only those who have had a full workup completed. He is very busy. He is the only doc in the lab. Email him at Michael.Goldenthal@...
                            >
                            > or call St. Christophor's hospital for Children in Philly and they will connect you to his voice mail.
                            >
                            > For those who asked. My kids have Complex I.
                            >
                            > ~Katie
                            > Alex 6yrs and Lauren 2 yrs (Both with mito)
                            > www.caringbridge.org/visit/alexanderlindemann
                            >
                            >
                            > --- In Mito@yahoogroups.com, Rivera Family <riverafamilygeorgia@> wrote:
                            > >
                            > > What complex does your kids have? I just mailed (overnight) our swabs... And was curious.. My daughter has complex1 and I am curous if it detects this specific complex?
                            > >
                            > >
                            > > God Bless,
                            > > Rafael & Elicia Rivera
                            > > www.sheltersonline.com
                            > >
                            > >
                            > >
                            > >
                            > > ________________________________
                            > > From: mitoakl <skl304@>
                            > > To: Mito@yahoogroups.com
                            > > Sent: Tue, December 1, 2009 5:47:47 AM
                            > > Subject: [Mito] Re: buccal swab testing
                            > >
                            > >
                            > >
                            > > We were called exactly one week from testing. My son's matched exactly to his muscle biopsy results. My daughter who we assumed based on symptoms (we are not going to biopsy her) showed a lower level of what Alex's did. He did me as well and while mine was "normal" it was on the lowest level of normal you can be. He is retesting both my daughter and me. Give him a call if you haven't received your results. he did say that he has been having huge numbers come in. He is the only guy in the lab.
                            > >
                            > > ~Katie
                            > > Alex 6 yrs and Lauren 2 yrs (both with mito)
                            > > www.caringbridge. org/visit/ alexanderlindema nn
                            > >
                            > > --- In Mito@yahoogroups. com, Tammy Martin <dtmartin628@ ...> wrote:
                            > > >
                            > > > Hi Everyone,
                            > > >
                            > > > I am hoping that everyone had a great holiday weekend.
                            > > >
                            > > > I have a quick question to those of you who have taken part in the St Christopher' s Buccal swab study for Mito...how long did it take you to get your results?
                            > > >
                            > > > Thanks in advance,
                            > > > Tammy
                            > > >
                            > >
                            >
                          • Susan Sifford
                            Is it correct that he is only doing it for those who have already had a biopsy? ... From: Katiebear Subject: [Mito] Re: buccal swab
                            Message 13 of 23 , Dec 2, 2009
                            • 0 Attachment
                              Is it correct that he is only doing it for those who have already had a biopsy?

                              --- On Wed, 12/2/09, Katiebear <andnowtheres2@...> wrote:

                              From: Katiebear <andnowtheres2@...>
                              Subject: [Mito] Re: buccal swab testing
                              To: Mito@yahoogroups.com
                              Date: Wednesday, December 2, 2009, 2:37 PM

                               
                              Thanks for posting this again!! I was able to get hold of him and he said my daughter would be a good candidate for his study.

                              --- In Mito@yahoogroups. com, "mitoakl" <skl304@...> wrote:
                              >
                              > Dr. Goldenthal is the doc at St. Chris. He most surely is taking more samples. Right now he is trying to prove that the buccal swab is as effective as a muscle biopsy so he is really looking at only those who have had a full workup completed. He is very busy. He is the only doc in the lab. Email him at Michael.Goldenthal@ ...
                              >
                              > or call St. Christophor' s hospital for Children in Philly and they will connect you to his voice mail.
                              >
                              > For those who asked. My kids have Complex I.
                              >
                              > ~Katie
                              > Alex 6yrs and Lauren 2 yrs (Both with mito)
                              > www.caringbridge. org/visit/ alexanderlindema nn
                              >
                              >
                              > --- In Mito@yahoogroups. com, Rivera Family <riverafamilygeorgi a@> wrote:
                              > >
                              > > What complex does your kids have? I just mailed (overnight) our swabs... And was curious.. My daughter has complex1 and I am curous if it detects this specific complex?
                              > >
                              > >
                              > > God Bless,
                              > > Rafael & Elicia Rivera
                              > > www.sheltersonline. com
                              > >
                              > >
                              > >
                              > >
                              > > ____________ _________ _________ __
                              > > From: mitoakl <skl304@>
                              > > To: Mito@yahoogroups. com
                              > > Sent: Tue, December 1, 2009 5:47:47 AM
                              > > Subject: [Mito] Re: buccal swab testing
                              > >
                              > >
                              > >
                              > > We were called exactly one week from testing. My son's matched exactly to his muscle biopsy results. My daughter who we assumed based on symptoms (we are not going to biopsy her) showed a lower level of what Alex's did. He did me as well and while mine was "normal" it was on the lowest level of normal you can be. He is retesting both my daughter and me. Give him a call if you haven't received your results. he did say that he has been having huge numbers come in. He is the only guy in the lab.
                              > >
                              > > ~Katie
                              > > Alex 6 yrs and Lauren 2 yrs (both with mito)
                              > > www.caringbridge. org/visit/ alexanderlindema nn
                              > >
                              > > --- In Mito@yahoogroups. com, Tammy Martin <dtmartin628@ ...> wrote:
                              > > >
                              > > > Hi Everyone,
                              > > >
                              > > > I am hoping that everyone had a great holiday weekend.
                              > > >
                              > > > I have a quick question to those of you who have taken part in the St Christopher' s Buccal swab study for Mito...how long did it take you to get your results?
                              > > >
                              > > > Thanks in advance,
                              > > > Tammy
                              > > >
                              > >
                              >

                            • Christopher & Heather Laurie
                              I tried to look up the dr doing the study and couldn t find him? Some one take pity on me and give me a number!!! Thank you all! GOd bless Heather Laurie
                              Message 14 of 23 , Dec 2, 2009
                              • 0 Attachment
                                I tried to look up the dr doing the study and couldn't find him? Some one take pity on me and give me a number!!! Thank you all!

                                GOd bless
                                Heather Laurie
                                www.specialneedshomeschooling.com


                              • Nicole Garman
                                you won t find his name or number listed at St Chris. My boys are in his study and are regular patients in the Neuro dept. Calling really is a waste of time.
                                Message 15 of 23 , Dec 2, 2009
                                • 0 Attachment
                                  you won't find his name or number listed at St Chris.  My boys are in his study and are regular patients in the Neuro dept.  Calling really is a waste of time.  Phone calls back are difficult to come by.  I found that emailing them has been the best way to handle it.  He is not always in every day so it may take a few days for him to get back to you.  He is very busy with this study so I am sure he finds it easier to get back to you at his leisure.  I emailed him two days ago and got an email back from him today.  Our swabs have been ongoing over hte past few months and will continue since our son Joshua had a muscle biopsy confirmation.  Michael has been compared to his brother and he not only has found the Complex I issue like Joshua but he also found a Complex IV issue with Michael.  Right now they are working only with Complex I and IV.  They are also working with certain age groups based on their controlls.  We just had a baby and as of right now they cannot test him until he is older.  I don't know if that helps but keep in mind it is research and a study so things work much differently then if it was a normal doctors visit and lab work.  Hope that this helps.  Feel free to contact me at any point.

                                  Nikki Garman


                                   

                                  To: Mito@yahoogroups.com
                                  From: blueknightdawn@...
                                  Date: Wed, 2 Dec 2009 16:55:39 -0500
                                  Subject: Re: [Mito] Re: buccal swab testing

                                   
                                  I tried to look up the dr doing the study and couldn't find him? Some one take pity on me and give me a number!!! Thank you all!

                                  GOd bless
                                  Heather Laurie
                                  www.specialneedshom eschooling. com





                                  Get gifts for them and cashback for you. Try Bing now.
                                • Meagan Ochsner
                                  I also reached him and he told me the same. Now I just wait to get the swabs in the mail. I m kind of excited about this. Meagan On Dec 2, 2009, at 3:37 PM,
                                  Message 16 of 23 , Dec 2, 2009
                                  • 0 Attachment
                                    I also reached him and he told me the same. Now I just wait to get the swabs in the mail. I'm kind of excited about this.

                                    Meagan


                                    On Dec 2, 2009, at 3:37 PM, "Katiebear" <andnowtheres2@...> wrote:

                                    Thanks for posting this again!! I was able to get hold of him and he said my daughter would be a good candidate for his study.

                                    --- In Mito@yahoogroups.com, "mitoakl" <skl304@...> wrote:

                                    Dr. Goldenthal is the doc at St. Chris. He most surely is taking more samples. Right now he is trying to prove that the buccal swab is as effective as a muscle biopsy so he is really looking at only those who have had a full workup completed. He is very busy. He is the only doc in the lab. Email him at Michael.Goldenthal@...

                                    or call St. Christophor's hospital for Children in Philly and they will connect you to his voice mail.

                                    For those who asked. My kids have Complex I.

                                    ~Katie
                                    Alex 6yrs and Lauren 2 yrs (Both with mito)
                                    www.caringbridge.org/visit/alexanderlindemann


                                    --- In Mito@yahoogroups.com, Rivera Family <riverafamilygeorgia@> wrote:

                                    What complex does your kids have? I just mailed (overnight) our swabs... And was curious.. My daughter has complex1 and I am curous if it detects this specific complex?


                                    God Bless,
                                    Rafael & Elicia Rivera
                                    www.sheltersonline.com




                                    ________________________________
                                    From: mitoakl <skl304@>
                                    To: Mito@yahoogroups.com
                                    Sent: Tue, December 1, 2009 5:47:47 AM
                                    Subject: [Mito] Re: buccal swab testing



                                    We were called exactly one week from testing. My son's matched exactly to his muscle biopsy results. My daughter who we assumed based on symptoms (we are not going to biopsy her) showed a lower level of what Alex's did. He did me as well and while mine was "normal" it was on the lowest level of normal you can be. He is retesting both my daughter and me. Give him a call if you haven't received your results. he did say that he has been having huge numbers come in. He is the only guy in the lab.

                                    ~Katie
                                    Alex 6 yrs and Lauren 2 yrs (both with mito)
                                    www.caringbridge. org/visit/ alexanderlindema nn

                                    --- In Mito@yahoogroups. com, Tammy Martin <dtmartin628@ ...> wrote:

                                    Hi Everyone,

                                    I am hoping that everyone had a great holiday weekend.

                                    I have a quick question to those of you who have taken part in the St Christopher' s Buccal swab study for Mito...how long did it take you to get your results?

                                    Thanks in advance,
                                    Tammy







                                    ------------------------------------

                                    Please contact mito-owner@yahoogroups.com with any problems or questions.Yahoo! Groups Links
                                  • Meagan Ochsner
                                    That is what he indicated in the e-mail he sent to me. Meagan On Dec 2, 2009, at 4:17 PM, Susan Sifford wrote: Is it correct that he
                                    Message 17 of 23 , Dec 2, 2009
                                    • 0 Attachment
                                      That is what he indicated in the e-mail he sent to me. 

                                      Meagan


                                      On Dec 2, 2009, at 4:17 PM, Susan Sifford <s.sifford@...> wrote:

                                      Is it correct that he is only doing it for those who have already had a biopsy?

                                      --- On Wed, 12/2/09, Katiebear <andnowtheres2@...> wrote:

                                      From: Katiebear <andnowtheres2@...>
                                      Subject: [Mito] Re: buccal swab testing
                                      To: Mito@yahoogroups.com
                                      Date: Wednesday, December 2, 2009, 2:37 PM

                                       
                                      Thanks for posting this again!! I was able to get hold of him and he said my daughter would be a good candidate for his study.

                                      --- In Mito@yahoogroups. com, "mitoakl" <skl304@...> wrote:
                                      >
                                      > Dr. Goldenthal is the doc at St. Chris. He most surely is taking more samples. Right now he is trying to prove that the buccal swab is as effective as a muscle biopsy so he is really looking at only those who have had a full workup completed. He is very busy. He is the only doc in the lab. Email him at Michael.Goldenthal@ ...
                                      >
                                      > or call St. Christophor' s hospital for Children in Philly and they will connect you to his voice mail.
                                      >
                                      > For those who asked. My kids have Complex I.
                                      >
                                      > ~Katie
                                      > Alex 6yrs and Lauren 2 yrs (Both with mito)
                                      > www.caringbridge. org/visit/ alexanderlindema nn
                                      >
                                      >
                                      > --- In Mito@yahoogroups. com, Rivera Family <riverafamilygeorgi a@> wrote:
                                      > >
                                      > > What complex does your kids have? I just mailed (overnight) our swabs... And was curious.. My daughter has complex1 and I am curous if it detects this specific complex?
                                      > >
                                      > >
                                      > > God Bless,
                                      > > Rafael & Elicia Rivera
                                      > > www.sheltersonline. com
                                      > >
                                      > >
                                      > >
                                      > >
                                      > > ____________ _________ _________ __
                                      > > From: mitoakl <skl304@>
                                      > > To: Mito@yahoogroups. com
                                      > > Sent: Tue, December 1, 2009 5:47:47 AM
                                      > > Subject: [Mito] Re: buccal swab testing
                                      > >
                                      > >
                                      > >
                                      > > We were called exactly one week from testing. My son's matched exactly to his muscle biopsy results. My daughter who we assumed based on symptoms (we are not going to biopsy her) showed a lower level of what Alex's did. He did me as well and while mine was "normal" it was on the lowest level of normal you can be. He is retesting both my daughter and me. Give him a call if you haven't received your results. he did say that he has been having huge numbers come in. He is the only guy in the lab.
                                      > >
                                      > > ~Katie
                                      > > Alex 6 yrs and Lauren 2 yrs (both with mito)
                                      > > www.caringbridge. org/visit/ alexanderlindema nn
                                      > >
                                      > > --- In Mito@yahoogroups. com, Tammy Martin <dtmartin628@ ...> wrote:
                                      > > >
                                      > > > Hi Everyone,
                                      > > >
                                      > > > I am hoping that everyone had a great holiday weekend.
                                      > > >
                                      > > > I have a quick question to those of you who have taken part in the St Christopher' s Buccal swab study for Mito...how long did it take you to get your results?
                                      > > >
                                      > > > Thanks in advance,
                                      > > > Tammy
                                      > > >
                                      > >
                                      >


                                    • Katiebear
                                      No! I sent him information of what my daughter had done and how she is suspected of having mito. He told me how he is trying to validate findings by
                                      Message 18 of 23 , Dec 2, 2009
                                      • 0 Attachment
                                        No! I sent him information of what my daughter had done and how she is suspected of having mito. He told me how he is trying to validate findings by investigating buccal enzyme activities in individuals (ages ranging from 2-32) with previously defined enzymatic deficiencies (particularly in complex I and IV). Using molecular techniques, he also can screen the same cheek swab extracts for common pathogenic mtDNA mutations which might be involved in the disease. All information you send to him is kept confidential.

                                        --- In Mito@yahoogroups.com, Susan Sifford <s.sifford@...> wrote:
                                        >
                                        > Is it correct that he is only doing it for those who have already had a biopsy?
                                        >
                                        > --- On Wed, 12/2/09, Katiebear <andnowtheres2@...> wrote:
                                        >
                                        >
                                        > From: Katiebear <andnowtheres2@...>
                                        > Subject: [Mito] Re: buccal swab testing
                                        > To: Mito@yahoogroups.com
                                        > Date: Wednesday, December 2, 2009, 2:37 PM
                                        >
                                        >
                                        >  
                                        >
                                        >
                                        >
                                        > Thanks for posting this again!! I was able to get hold of him and he said my daughter would be a good candidate for his study.
                                        >
                                        > --- In Mito@yahoogroups. com, "mitoakl" <skl304@> wrote:
                                        > >
                                        > > Dr. Goldenthal is the doc at St. Chris. He most surely is taking more samples. Right now he is trying to prove that the buccal swab is as effective as a muscle biopsy so he is really looking at only those who have had a full workup completed. He is very busy. He is the only doc in the lab. Email him at Michael.Goldenthal@ ...
                                        > >
                                        > > or call St. Christophor' s hospital for Children in Philly and they will connect you to his voice mail.
                                        > >
                                        > > For those who asked. My kids have Complex I.
                                        > >
                                        > > ~Katie
                                        > > Alex 6yrs and Lauren 2 yrs (Both with mito)
                                        > > www.caringbridge. org/visit/ alexanderlindema nn
                                        > >
                                        > >
                                        > > --- In Mito@yahoogroups. com, Rivera Family <riverafamilygeorgi a@> wrote:
                                        > > >
                                        > > > What complex does your kids have? I just mailed (overnight) our swabs... And was curious.. My daughter has complex1 and I am curous if it detects this specific complex?
                                        > > >
                                        > > >
                                        > > > God Bless,
                                        > > > Rafael & Elicia Rivera
                                        > > > www.sheltersonline. com
                                        > > >
                                        > > >
                                        > > >
                                        > > >
                                        > > > ____________ _________ _________ __
                                        > > > From: mitoakl <skl304@>
                                        > > > To: Mito@yahoogroups. com
                                        > > > Sent: Tue, December 1, 2009 5:47:47 AM
                                        > > > Subject: [Mito] Re: buccal swab testing
                                        > > >
                                        > > >
                                        > > >
                                        > > > We were called exactly one week from testing. My son's matched exactly to his muscle biopsy results. My daughter who we assumed based on symptoms (we are not going to biopsy her) showed a lower level of what Alex's did. He did me as well and while mine was "normal" it was on the lowest level of normal you can be. He is retesting both my daughter and me. Give him a call if you haven't received your results. he did say that he has been having huge numbers come in. He is the only guy in the lab.
                                        > > >
                                        > > > ~Katie
                                        > > > Alex 6 yrs and Lauren 2 yrs (both with mito)
                                        > > > www.caringbridge. org/visit/ alexanderlindema nn
                                        > > >
                                        > > > --- In Mito@yahoogroups. com, Tammy Martin <dtmartin628@ ...> wrote:
                                        > > > >
                                        > > > > Hi Everyone,
                                        > > > >
                                        > > > > I am hoping that everyone had a great holiday weekend.
                                        > > > >
                                        > > > > I have a quick question to those of you who have taken part in the St Christopher' s Buccal swab study for Mito...how long did it take you to get your results?
                                        > > > >
                                        > > > > Thanks in advance,
                                        > > > > Tammy
                                        > > > >
                                        > > >
                                        > >
                                        >
                                      • Christopher & Heather Laurie
                                        Thank you sooooo much. If this test showed anything that would be helpful. Since I have now had a stroke at least once possibly more AND several of the kids
                                        Message 19 of 23 , Dec 2, 2009
                                        • 0 Attachment
                                          Thank you sooooo much. If this test showed anything that would be helpful. Since I have now had a stroke at least once possibly more AND several of the kids have shown signs of strokes it seems incredibly suspicous. Even the neuro who saw me without knowing the kids background wanted to eventually test me for mito. I hate having mito. I also hate not knowing FOR SURE and always getting told no we need to redo all the previous tests to see if they were really right. frustration!
                                          God bless
                                          Heather L
                                          www.specialneedshomeschooling.com


                                        • mito1mom@vzw.blackberry.net
                                          Hi. I ve been following the posts about the buccal swab testing. Both my son and I have the 4216 mutation. Do you have Dr. Goldenthal s email address for the
                                          Message 20 of 23 , Dec 2, 2009
                                          • 0 Attachment
                                            Hi. I've been following the posts about the buccal swab testing. Both my son and I have the 4216 mutation. Do you have Dr. Goldenthal's email address for the buccal swab testing? Does this testing help to find out complex deficiencies and get a diagnosis?
                                            Thanks for your help

                                            Kristin

                                            Take Care, Kristin Sent from my Verizon Wireless BlackBerry


                                            From: Nicole Garman <narnao@...>
                                            Date: Wed, 2 Dec 2009 17:07:07 -0500
                                            To: <mito@yahoogroups.com>
                                            Subject: RE: [Mito] Re: buccal swab testing

                                             

                                            you won't find his name or number listed at St Chris.  My boys are in his study and are regular patients in the Neuro dept.  Calling really is a waste of time.  Phone calls back are difficult to come by.  I found that emailing them has been the best way to handle it.  He is not always in every day so it may take a few days for him to get back to you.  He is very busy with this study so I am sure he finds it easier to get back to you at his leisure.  I emailed him two days ago and got an email back from him today.  Our swabs have been ongoing over hte past few months and will continue since our son Joshua had a muscle biopsy confirmation.  Michael has been compared to his brother and he not only has found the Complex I issue like Joshua but he also found a Complex IV issue with Michael.  Right now they are working only with Complex I and IV.  They are also working with certain age groups based on their controlls.  We just had a baby and as of right now they cannot test him until he is older.  I don't know if that helps but keep in mind it is research and a study so things work much differently then if it was a normal doctors visit and lab work.  Hope that this helps.  Feel free to contact me at any point.

                                            Nikki Garman


                                             


                                            To: Mito@yahoogroups. com
                                            From: blueknightdawn@ yahoo.com
                                            Date: Wed, 2 Dec 2009 16:55:39 -0500
                                            Subject: Re: [Mito] Re: buccal swab testing

                                             
                                            I tried to look up the dr doing the study and couldn't find him? Some one take pity on me and give me a number!!! Thank you all!

                                            GOd bless
                                            Heather Laurie
                                            www.specialneedshom eschooling. com





                                            Get gifts for them and cashback for you. Try Bing now.
                                          • HEATHER EVANSSMITH
                                            No, None of my girls have had biopsies and he has done them 4 times. Heather Mommy to: Sarina-(Hodgkin s Survivor, CP, Spina Bifidai Occulta, Scoliosis,
                                            Message 21 of 23 , Dec 2, 2009
                                            • 0 Attachment
                                              
                                              No,
                                               
                                              None of my girls have had biopsies and he has done them 4 times.
                                               
                                              Heather
                                              Mommy to:
                                              Sarina-(Hodgkin's Survivor, CP, Spina Bifidai Occulta, Scoliosis, diabetes, ASD, Raynaud's, Failure To Thrive) & Elizabeth (diabetes) (11/8/96)
                                              Breanna- (diabetes,Epilepsy,CP, heart murmur)(10/8/01)
                                              http://www.caringbridge.org/pa/sarina/
                                              ----- Original Message -----
                                              Sent: Wednesday, December 02, 2009 4:17 PM
                                              Subject: Re: [Mito] Re: buccal swab testing

                                               

                                              Is it correct that he is only doing it for those who have already had a biopsy?

                                              --- On Wed, 12/2/09, Katiebear <andnowtheres2@ yahoo.com> wrote:

                                              From: Katiebear <andnowtheres2@ yahoo.com>
                                              Subject: [Mito] Re: buccal swab testing
                                              To: Mito@yahoogroups. com
                                              Date: Wednesday, December 2, 2009, 2:37 PM

                                               
                                              Thanks for posting this again!! I was able to get hold of him and he said my daughter would be a good candidate for his study.

                                              --- In Mito@yahoogroups. com, "mitoakl" <skl304@...> wrote:
                                              >
                                              > Dr. Goldenthal is the doc at St. Chris. He most surely is taking more samples. Right now he is trying to prove that the buccal swab is as effective as a muscle biopsy so he is really looking at only those who have had a full workup completed. He is very busy. He is the only doc in the lab. Email him at Michael.Goldenthal@ ...
                                              >
                                              > or call St. Christophor' s hospital for Children in Philly and they will connect you to his voice mail.
                                              >
                                              > For those who asked. My kids have Complex I.
                                              >
                                              > ~Katie
                                              > Alex 6yrs and Lauren 2 yrs (Both with mito)
                                              > www.caringbridge. org/visit/ alexanderlindema nn
                                              >
                                              >
                                              > --- In Mito@yahoogroups. com, Rivera Family <riverafamilygeorgi a@> wrote:
                                              > >
                                              > > What complex does your kids have? I just mailed (overnight) our swabs... And was curious.. My daughter has complex1 and I am curous if it detects this specific complex?
                                              > >
                                              > >
                                              > > God Bless,
                                              > > Rafael & Elicia Rivera
                                              > > www.sheltersonline. com
                                              > >
                                              > >
                                              > >
                                              > >
                                              > > ____________ _________ _________ __
                                              > > From: mitoakl <skl304@>
                                              > > To: Mito@yahoogroups. com
                                              > > Sent: Tue, December 1, 2009 5:47:47 AM
                                              > > Subject: [Mito] Re: buccal swab testing
                                              > >
                                              > >
                                              > >
                                              > > We were called exactly one week from testing. My son's matched exactly to his muscle biopsy results. My daughter who we assumed based on symptoms (we are not going to biopsy her) showed a lower level of what Alex's did. He did me as well and while mine was "normal" it was on the lowest level of normal you can be. He is retesting both my daughter and me. Give him a call if you haven't received your results. he did say that he has been having huge numbers come in. He is the only guy in the lab.
                                              > >
                                              > > ~Katie
                                              > > Alex 6 yrs and Lauren 2 yrs (both with mito)
                                              > > www.caringbridge. org/visit/ alexanderlindema nn
                                              > >
                                              > > --- In Mito@yahoogroups. com, Tammy Martin <dtmartin628@ ...> wrote:
                                              > > >
                                              > > > Hi Everyone,
                                              > > >
                                              > > > I am hoping that everyone had a great holiday weekend.
                                              > > >
                                              > > > I have a quick question to those of you who have taken part in the St Christopher' s Buccal swab study for Mito...how long did it take you to get your results?
                                              > > >
                                              > > > Thanks in advance,
                                              > > > Tammy
                                              > > >
                                              > >
                                              >


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