toddm1960 Posted September 16, 2009 Report Share Posted September 16, 2009 I'm here in Atlanta to see Dr Shoffner, testing for the next three days, wish me luck. I'll let you know how everything's going. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted September 16, 2009 Report Share Posted September 16, 2009 Good luck! Hope you get some answers! Quote Link to comment Share on other sites More sharing options...
erik Posted September 16, 2009 Report Share Posted September 16, 2009 Good luck! I hope they can find some helpful answers for you. I am curious what sort of testing they do... please do let us know if you can. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted September 16, 2009 Author Report Share Posted September 16, 2009 Met with Dr. Schoffner today.........wow. There's alot going on with mitochondrial research as it effects dysautonomia. Dr. Schoffner has dicovered a new compound he's looking to get FDA approval for to correct specific mitochondrial disorders. Tomorrow I'll have the muscle biopsy to confirm if I have the varient, he feels there may a sub group of us with this cause for our dysautonomia. It's two months to get these results back, so like all things.........hurry up and wait. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted September 16, 2009 Report Share Posted September 16, 2009 A close hello from South Atlanta!What are the symptoms he thinks are specific to this subset of dysautonomia? Do you have POTS or other ANS issues? What led your docs down the mito path?Thanks! Quote Link to comment Share on other sites More sharing options...
juliegee Posted September 16, 2009 Report Share Posted September 16, 2009 Another close Hello from Athens, 60 miles (of awful traffic) northeast of you! Hope you find answers. I'm also interested- keep us posted!Julie Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted September 16, 2009 Author Report Share Posted September 16, 2009 The sub set he spoke to was in the cause of our dysautonomia, the ANS disruption could cover all types of dysautonomia. Mitochondrial disorders are only one of the possible causes, what lead me down this path was over whelming exhaustion, and muscle fatigue after very limited activity. I'm orthostatic hypertensive, stomach pooler, HR increases around 50 BPM and my pulse preassure narrows to around 15 when standing. Has anyone else seen Dr. Schoffner? Quote Link to comment Share on other sites More sharing options...
firewatcher Posted September 17, 2009 Report Share Posted September 17, 2009 The sub set he spoke to was in the cause of our dysautonomia, the ANS disruption could cover all types of dysautonomia. Mitochondrial disorders are only one of the possible causes, what lead me down this path was over whelming exhaustion, and muscle fatigue after very limited activity. I'm orthostatic hypertensive, stomach pooler, HR increases around 50 BPM and my pulse preassure narrows to around 15 when standing. Has anyone else seen Dr. Schoffner?Nope, where is he? I get exactly the same symptoms! Quote Link to comment Share on other sites More sharing options...
ken870 Posted September 17, 2009 Report Share Posted September 17, 2009 does he have good results treating stomach pooling. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted September 17, 2009 Author Report Share Posted September 17, 2009 Dr. Schoffner doesn't treat dysautonomia, he's mitochondrial testing. I was very surspised to learn during my office visit he has a compound (that's all he would call it) that he's looking to get FDA approval for a research study on. Had my muscle biopsy and spinal tap today, I'll know in two months if I qualify for the study. His theory is if he can fix or help the mitochondrial problem, the dysautonomia will follow, again that's only if a mitochondrial problem is the root cause of our dysautonomia. Quote Link to comment Share on other sites More sharing options...
erik Posted September 17, 2009 Report Share Posted September 17, 2009 Did it sound like his "compound" is focused on a low level mitochondrial fatigue sort of thing? Like a muscle fatigue thing or a CFS sort of deal... or did it sound like a nervous systems sort of thing? Or something else? I understand he was vague, just wondering if he hinted as to what specific symptoms the compound was intended to address most directly (with the rest kind of clearing up in response). Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted September 17, 2009 Author Report Share Posted September 17, 2009 For the mitochondrial disorders, improving this function should improve thr ANS disfunction. Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted September 18, 2009 Report Share Posted September 18, 2009 Good luck! I hope you get some answers. I started down the mitochondrial road, but this doctor doesn't accept Medicare as insurance, so that put an quick end to continuing to consider the option. However, when I was exploring the option he was spoken very highly of.~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted September 18, 2009 Author Report Share Posted September 18, 2009 Shell have you thought to go to another genesist that does except medicare and have your blood work or muscle biopsy sent out to his research lab. He takes in samples from all over the world. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted September 18, 2009 Author Report Share Posted September 18, 2009 A close goodmorning to Firewatcher & Mack's Mom, it's been very nice here in Atlanta....sorry I brought the New York rain with me. FW Dr. Schoffner is with Medical Neurogenetics, Nothern Atlanta. Quote Link to comment Share on other sites More sharing options...
ana_22 Posted September 23, 2009 Report Share Posted September 23, 2009 how did you go? when do you get some results?at first i misread your post i thought you said you were going to be there for 3 weeks!!!! i thought what on earth could you do for 3 weeks!what kind of tests did they do? Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted September 23, 2009 Author Report Share Posted September 23, 2009 Two days of testing, metabolic tests, spinal tap and a muscle biopsy. It will take about 8 weeks to get the results, and then from there to see if I qualify for any of his research studies. So it's back to waiting......... Quote Link to comment Share on other sites More sharing options...
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