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Metabolic vs. Mitochondrial??

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  • waislandgirl@aol.com
    Hi all, Andrew and Jonathan saw their Genetics/Metabolic doc today and he agreed that Andrew s shoulder girdle muscle myopathy/wasting has progressed. So, he
    Message 1 of 9 , May 1, 2002
      Hi all,
      Andrew and Jonathan saw their Genetics/Metabolic doc today and he agreed that
      Andrew's shoulder girdle muscle myopathy/wasting has progressed. So, he
      changed the diagnosis from Ketone Utilization Disorder to Ketone Utilization
      Disorder, Rule Out Mitochondrial Disorder.

      Do any of you know of any specific mito complex which results in proximal
      (rhomboid most severe, scapular winging, pectoral) muscle wasting/myopathy
      and also presents with autonomic dysfunction, metabolic severe ketosis, but
      no blood lactic acidosis?

      Thanks so much,
      Dena
    • Mary Riley
      Dena, Who did you see? Was it Dr. Scott? Did that diagnosis now rule out mito in his opinion? Keep me informed. Thanks, Mary PS had a great trip!!!!
      Message 2 of 9 , May 3, 2002
        Dena,
        Who did you see?  Was it Dr. Scott?  Did that diagnosis now rule out mito in his opinion?  Keep me informed.
        Thanks,
         Mary
         PS  had a great trip!!!! -----Original Message-----
        From: waislandgirl@... [mailto:waislandgirl@...]
        Sent: Wednesday, May 01, 2002 12:18 AM
        To: mito@yahoogroups.com
        Subject: [Mito] Metabolic vs. Mitochondrial??

        Hi all,
        Andrew and Jonathan saw their Genetics/Metabolic doc today and he agreed that
        Andrew's shoulder girdle muscle myopathy/wasting has progressed.  So, he
        changed the diagnosis from Ketone Utilization Disorder to Ketone Utilization
        Disorder, Rule Out Mitochondrial Disorder.

        Do any of you know of any specific mito complex which results in proximal
        (rhomboid most severe, scapular winging, pectoral) muscle wasting/myopathy
        and also presents with autonomic dysfunction, metabolic severe ketosis, but
        no blood lactic acidosis?

        Thanks so much,
        Dena


        Please contact mito-owner@yahoogroups.com with any problems or questions.

        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
      • waislandgirl@aol.com
        Hi Mary, It was Dr. Hannibal in Genetics. No, Dr. Hannibal is now ruling in the possibility of mito, instead of just metabolic Ketone Utilization Disorder.
        Message 3 of 9 , May 3, 2002
          Hi Mary,
          It was Dr. Hannibal in Genetics. No, Dr. Hannibal is now "ruling in" the
          possibility of mito, instead of just metabolic Ketone Utilization Disorder.

          Dena
        • VisibleWorship@aol.com
          Dena if you go to mdausa.org...they have an MD that is limb-girdle? mioght be worth reading... deb
          Message 4 of 9 , May 3, 2002
            Dena

            if you go to mdausa.org...they have an MD that is limb-girdle? mioght be
            worth reading...

            deb
          • VisibleWorship@aol.com
            Dena if you go to mdausa.org...they have an MD that is limb-girdle? mioght be worth reading... deb
            Message 5 of 9 , May 3, 2002
              Dena

              if you go to mdausa.org...they have an MD that is limb-girdle? mioght be
              worth reading...

              deb
            • VisibleWorship@aol.com
              Dena if you go to mdausa.org...they have an MD that is limb-girdle? mioght be worth reading... deb
              Message 6 of 9 , May 3, 2002
                Dena

                if you go to mdausa.org...they have an MD that is limb-girdle? mioght be
                worth reading...

                deb
              • Mary Riley
                Dena, Don t you feel like round and round we go where we stop nobody knows:) Well, just got Cameron s cbc and urine organic acids back. The only comment was
                Message 7 of 9 , May 3, 2002
                  Dena,
                   
                  Don't you feel like round and round we go where we stop nobody knows:)
                   
                  Well, just got Cameron's cbc and urine organic acids back.  The only comment was that ethylmolonic is still above reference range but has decreased since last test in Jan.  He made no comment on the high 3-OH-Butyric,  Acetiacetic or glutaric acid totals.  They are not really high but 109 <81, 85 <22, and 36 <25 respectively.  This test was taken when Cameron was completely well, on CO Q10, riboflavin and antibiotics.  So these should not be elevated, I don't think.  Well, no Denmark DNA results yet, so just keeping Cam happy and healthy.
                   
                  Take Care, Mary
                  -----Original Message-----
                  From: waislandgirl@... [mailto:waislandgirl@...]
                  Sent: Friday, May 03, 2002 3:45 PM
                  To: Mito@yahoogroups.com
                  Subject: Re: [Mito] Metabolic vs. Mitochondrial??

                  Hi Mary,
                  It was Dr. Hannibal in Genetics.  No, Dr. Hannibal is now "ruling in" the
                  possibility of mito, instead of just metabolic Ketone Utilization Disorder.

                  Dena


                  Please contact mito-owner@yahoogroups.com with any problems or questions.

                  Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
                • waislandgirl@aol.com
                  In a message dated 5/4/02 1:08:05 PM Pacific Daylight Time, VisibleWorship@aol.com writes:
                  Message 8 of 9 , May 5, 2002
                    In a message dated 5/4/02 1:08:05 PM Pacific Daylight Time,
                    VisibleWorship@... writes:

                    << if you go to mdausa.org...they have an MD that is limb-girdle? mioght be
                    worth reading...

                    deb
                    >>

                    Thanks Deb. Shriners in Portland ruled out limb-girdle last spring and then
                    referred us for metabolic/mito causes.

                    Dena
                  • waislandgirl@aol.com
                    In a message dated 5/4/02 1:09:48 PM Pacific Daylight Time, mary@stampwithus.com writes:
                    Message 9 of 9 , May 5, 2002
                      In a message dated 5/4/02 1:09:48 PM Pacific Daylight Time,
                      mary@... writes:

                      << They are not really high but 109 <81, 85 <22, and
                      36 <25 respectively. This test was taken when Cameron was completely well,
                      on CO Q10, riboflavin and antibiotics. >>

                      Dr. Hannibal told us they are only diagnostic when ill! :-) I just picked
                      Jonathan up from his dad's house for the wkend, and he said he *really*
                      notices a positive difference (energy and mood) on the Carnitor. (He's been
                      on it for 3 days now.) Go figure, since his acylcarnitine profile came back
                      normal! But, I've also read that metabolic kids can benefit from it even
                      with normal lab results. And, it seems to be working for Jonathan. (No
                      change for Andrew yet, but his muscles are his only concern at present
                      anyway.)

                      Take care,
                      Dena p.s. Are you going to Dallas?
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