Guest guest Posted May 15, 1998 Report Share Posted May 15, 1998 Ken or anyone, So does Dr. Cohen in OH do the fresh muscle biopsys or not? I was thinking it is my daughter Shenan who should do that and not as she would have both the nDNA and the mtDNA disorders most likely or at least the mtDNA which wouldn't have being my son's son. (Unless of course he had one thru his mom). It does look like DSH will agree to cover his SPECT and maybe even the transportation, keeping my fingers crossed and praying hard. So far everyone I've talked to has been very compassionate and understanding. I need to make a symptom list for the extended family members to check off. Got any ideas where to start or is there such lists already available and where? I thought I would start with the symptoms I've recorded with myself and my kids and things I've heard on this list and then chk out the mito web sites & infor. I've been sent on mito. It's hard to get those whose symptoms have been mild or transient to work with me as they feel, " We have nothing wrong. " They seem afraid it is some sort of stigma to admit any problems physical, mental, or emotional. So it is like pulling teeth to get infor that would help those of us suffering so much more severely. I've tried explaining I need a complete picture for the Dr.s to help US and I am not trying to force you to get any help or label you. S. Biopsies >From: mitodad@... > >To anyone interested in biopsies. > >St. does do fresh biopsies, but there is a limiting factor to their capabilities. As I found out with my new patient that is going to be biopsied in Atlanta in June, St. has a weight limitation. They have looked at 3 of my patients, 2 who were apparently above the wt. limit and were biopsied, and one who wasn't biopsied who was just teetering below 20 pounds. Being a pediatrician and seeing kids under 20 pounds, I've become very " concerned " about the lack of resources locally (I live on the Jersey side of Philly). So, Philly offers another option for some people, but if less than 25 pounds whish is what I was told was their cut-off, then don't spend time, energy, hope, effort, etc in coming to Philly. > >Ken > > >------------------------------------------------------------------------ >Are you hogging all the fun? >http://www.onelist.com >Friends tell friends about ONElist! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 1998 Report Share Posted May 15, 1998 Jeannine, correct. Will look into it. SO excited with what I have just found on the internet connecting our suspected nDNA dominant mito problems with people in Switzerland doing technical studies on what I beleive is the problem. I ran to my files and pulled out the Alz. infor. etc. and I am so excited!! I HAVE to find someone who can put the technical with the expression of it and many of us can have help in medically technically understood ways. This is to do with the GABA amino acid, benzodiazepines (like Valium), etc. I wish to God I could take my mind with it's knowledge & experiences and meld it into some bright person's mind who has the tools and power at their disposal to put this all into a form we could all benefit from. I wish I could understand even more of the technical parts but I get enough to know I am right here and feel like a train headed full speed down a track to the correct answer. I just need an engineer to be waiting in the train station to meet me who can arrange all the other trains to go the right places so it will all work out! S. Re: Biopsies > > >, > >Dr.Cohen does not actually do the biopsies in Cleveland, he is a >neurologist not a surgeon. He does see folks with mitochondrial >disease and he will help make the arrangements for a biopsy to be >done, either at Case Western in Cleveland(actually where the specimen >goes), or ish Rite in Atlanta. > >You are so close to the folks in California that also do fresh muscle >biopsies, wouldn't it be easier all the way around for you to try to >arrange an evaluation out there? There are all kinds of folks on >the Ca list that give some guidance and perhaps even help with the >arrangements, or steer you in the right direction. > >Jeannine > > >------------------------------------------------------------------------ >ONElist: where the world talks! >http://www.onelist.com >Join a new list today. >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
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