Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Kent, There are only a few facilities in the United States that are capable of doing a fresh muscle biopsy and running all the appropriate tests on it. One is Cleveland Clinic in Cleveland, and I am not sure where the others are. kent thegaffer23@...> wrote: thanks Laurie, Barbara and Hazel for your info and encouragement. so it seems i need to talk to the doc doing the biopsy about enzyme assays on a fresh sample as well as COX, SDH and gamouri staining. does that sound right? is there a good pathologist here in illinois? kent 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 June 1, 2005 Report Share Posted June 1, 2005 Hi kent, Yes, I think you need to go to one of the doctors that specializes in this disease, not even just a regular neuro. I do remember an MDA neuro recently telling me he wanted me to see someone who is in NYC. I believe his name is Dr. Hirano at Columbia Presbeterian. Please someone else reply if you know Hirano and confirm, as I am not certain the lab there does the fresh biopsy. If my memory serves me correctly, the MDA neuro did say that Cleveland was backed up so far that he wanted me to see Hirano and do the fresh biopsy there. I think if you call the United Mitochondiral Disease Foundation, they will give you local neuro's that will be very familiar with the disease. I do remember calling them and getting several local referrals after I found out Cleveland would be unavailable. http://www.umdf.org/ United Mitochondrial Disease Foundation 8085 Saltsburg Road, Suite 201 Pittsburgh, PA 15239 Phone: FAX: God bless, Hazelpone ----- Original Message ----- > > kent thegaffer23@...> wrote: > thanks Laurie, Barbara and Hazel for your info and encouragement. > so it seems i need to talk to the doc doing the biopsy about enzyme > assays on a fresh sample as well as COX, SDH and gamouri staining. > does that sound right? is there a good pathologist here in illinois? > kent Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Hi kent, Yes, I think you need to go to one of the doctors that specializes in this disease, not even just a regular neuro. I do remember an MDA neuro recently telling me he wanted me to see someone who is in NYC. I believe his name is Dr. Hirano at Columbia Presbeterian. Please someone else reply if you know Hirano and confirm, as I am not certain the lab there does the fresh biopsy. If my memory serves me correctly, the MDA neuro did say that Cleveland was backed up so far that he wanted me to see Hirano and do the fresh biopsy there. I think if you call the United Mitochondiral Disease Foundation, they will give you local neuro's that will be very familiar with the disease. I do remember calling them and getting several local referrals after I found out Cleveland would be unavailable. http://www.umdf.org/ United Mitochondrial Disease Foundation 8085 Saltsburg Road, Suite 201 Pittsburgh, PA 15239 Phone: FAX: God bless, Hazelpone ----- Original Message ----- > > kent thegaffer23@...> wrote: > thanks Laurie, Barbara and Hazel for your info and encouragement. > so it seems i need to talk to the doc doing the biopsy about enzyme > assays on a fresh sample as well as COX, SDH and gamouri staining. > does that sound right? is there a good pathologist here in illinois? > kent Quote Link to comment Share on other sites More sharing options...
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