Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 Ditto to a's feelings. I think that the hassle of going 5 hours to Boston (a bit less than from Iowa though!) was outweighed heavily by the positive experience (so far) I have had. I am used to telling doctors about my condition, and just to have someone give ME some ideas on what to do and how to proceed, it was GREAT. Same thing about 20 hours to Atlanta for me. Gosh, I keep hearing about doctors at NEMC, in Atlanta, and Cleveland Clinic, who know " what's what " . I understand that UCLA is good if not better, but after that, it's pot luck, YMMV Take care, RH > > , > I agree with you that there are no mito experts nearby. I live > in Iowa, but have traveled to Milwaukee before to try to find a doctor > who knew something about mito. I saw Dr. Peltier and she confirmed my > mito diagnosis, but I only had the one visit due to insurance. My > insurance feels I should be going to the University of Iowa Hospitals and > Clinics, as they have a great reputation in the country. They are good, > but not on mito. I am now traveling out to Boston to be seen by doctors > out there every 6 months. It will be my second time going, in December. > I do hope that you can find someone doctor around here to help. > > Smiles, > a > > There are no mito experts anywhere nearby. My son's > labs are unusual even for mito. He has problems in > copper metabolism, for example. But his problems are > exactly the opposite of known disorders. We have been > told that his condition is incompatible with life but > then given no ideas or suggestions about where to go > or what to do. > > We see subspecialists in Wisconsin. There is a good > FOD person there but he isn't anyone we want to see. > He has refused to recognize positive fresh muslce > biopies for some patients we know. What can he do for > us? We will wait for Whiteman because we have no choice. > > > > Mom to the two best kids in the world! > http://www.caringbridge.org/visit/thomasandkatie > > > > > __________________________________ > Yahoo! Mail - PC Magazine Editors' Choice 2005 > http://mail.yahoo.com > > > 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 November 1, 2005 Report Share Posted November 1, 2005 The doctors at the Mayo Clinic in Rochester, MN are awesome. Unfortunately, there is a waiting list. Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2005 Report Share Posted November 2, 2005 --- DarleneASP@... wrote: > The doctors at the Mayo Clinic in Rochester, MN are > awesome. Unfortunately, > there is a waiting list. Whiteman is gone and there's not another mito specialist we'd like to see there---not at all. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________ Yahoo! FareChase: Search multiple travel sites in one click. http://farechase.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2005 Report Share Posted November 2, 2005 Darlene, I went to the Mayo Clinic a long time ago, when I was trying to get a diagnosis. Unfortunately, being a teenager with these symptoms, all I got was " it is in your head " . The one doctor did ask me if it was me or my parents that " said " I had all these medical issues and needed to seek out medical help. I know that there are good doctors there now, especially Dr. Whiteman, who unfortunately, is now gone. Who do you see? It would be nice to have " local " doctors. Smiles, a On Wed, 2 Nov 2005 00:24:09 EST DarleneASP@... writes: The doctors at the Mayo Clinic in Rochester, MN are awesome. Unfortunately, there is a waiting list. Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2005 Report Share Posted November 2, 2005 a I see Dr. Singer. he's a neurologist. I originally went to Mayo because I have Cerebellar Degeneration and my local neurologist couldn't find the cause of it so he suggested I go to Mayo. They did test after test after test. I saw other doctors but I don't remember their names cause I didn't see them much. I found them all to be very professional and sympathetic and not once did anyone question my mental health or whether or not I really had these symptoms. In fact, when I told him that my diagnosis was Cerebellar Degeneration, he said " We can do better than that. He calls me about once a month to see how I'm doing and if there's been any changes in my health. The last time he called, I told him that I was having a little trouble keeping up with all the supplements because insurance doesn't cover them and I have to take so many that I run out quicker than I can afford to get them. he said he was going to try to find some way for me to get them. I know there probably isn't anything he can do but I thought it was very nice of him to offer. Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Darlene, I am glad that you have found such a great doctor. That is so important. I know that there are good ones at Mayo. My experience there was about 15 years ago, so I am sure they have come a long way in mito knowledge since then. My insurance flat out refused to let me try Mayo again (of course they didn't know I went 15 years ago), but oddly enough allowed one visit to Boston. Smiles, a On Thu, 3 Nov 2005 00:37:03 EST DarleneASP@... writes: a I see Dr. Singer. he's a neurologist. I originally went to Mayo because I have Cerebellar Degeneration and my local neurologist couldn't find the cause of it so he suggested I go to Mayo. They did test after test after test. I saw other doctors but I don't remember their names cause I didn't see them much. I found them all to be very professional and sympathetic and not once did anyone question my mental health or whether or not I really had these symptoms. In fact, when I told him that my diagnosis was Cerebellar Degeneration, he said " We can do better than that. He calls me about once a month to see how I'm doing and if there's been any changes in my health. The last time he called, I told him that I was having a little trouble keeping up with all the supplements because insurance doesn't cover them and I have to take so many that I run out quicker than I can afford to get them. he said he was going to try to find some way for me to get them. I know there probably isn't anything he can do but I thought it was very nice of him to offer. Darlene Quote Link to comment Share on other sites More sharing options...
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