Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 Hi All, Have been quiet for some time but thought I'd throw in my two cents worth. Dewayne (DW) had a frozen biopsy sent to Athena in 2000......a few irregular muscle threads was all that came back. After several more trips to the hospital for rhabdo and severe pain, the drs in Lexington sent him to Ohio State to Dr. Kissel (head of MDA clinic) in Nov of 01. He took one look at Dewayne and asked if we knew anyone in Texas? He said there were 3 places he would recommend...1. New York, 2.Texas & 3. Somewhere in Amsterdam. It was right after Sept 11 and there was still alot of confusion and problems flying into New York. I knew DW couldn't make it overseas, so Texas was chosen. We flew to Dallas to Southwestern to Dr. Ron Haller, who did a fresh muscle and a skin biopsy (January 2002). He also performed several tests including the infamous " exercise bike " test which showed a major problem with Dewayne's ammonia levels. The other biopsies showed COX deficiencies among other problems. I believe the Dr. was the one who did the fibroblast studies. Dr. Haller's lab is called the Environmental Exercise Institute or something like that. I could look it up if anyone needs it. Didn't mean to go so long but I cut it as short as possible. Even though I don't post often (it's busy farming season) I do read every few days and pray for each of you. Love, Lynda R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 Hi Lynda, It is so great hearing from you. I know you are busy with Dewayne, the children, your job and the farm, but I am always happy to see an email from you and of course I always pray for you, Dewayne and the family. Thanks for posting the information for I am sure that it will be helpful to someone, especially those who are just starting this journey. The more knowledge we have the better we can care for ourselves. How are things with DW? Is he feeling any better? Is he able to walk some yet or is he still dependent on the wheelchair/scooter? I hope and pray that things are as good as can be with you and that DW's health is improving with each day. Lynda, I just wanted to let you know just how much of an inspiration you are to me and so many others. You are a strong, well guided woman who has a tremendous responsibility and yet you stand TALL everyday. You are a blessing and have a heart of Gold that is filled with love. Thank you for always taking the time to pray for each and every one of us. And I pray for you and your family daily as well. Have a Great Day!!! Hugs, Ann-Marie At 06:04 AM 6/29/2005, you wrote: >Hi All, >Have been quiet for some time but thought I'd throw in my two cents worth. >Dewayne (DW) had a frozen biopsy sent to Athena in 2000......a few >irregular muscle threads was all that came back. After several more trips >to the hospital for rhabdo and severe pain, the drs in Lexington sent him >to Ohio State to Dr. Kissel (head of MDA clinic) in Nov of 01. He >took one look at Dewayne and asked if we knew anyone in Texas? He said >there were 3 places he would recommend...1. New York, 2.Texas & 3. >Somewhere in Amsterdam. It was right after Sept 11 and there was still >alot of confusion and problems flying into New York. I knew DW couldn't >make it overseas, so Texas was chosen. >We flew to Dallas to Southwestern to Dr. Ron Haller, who did a fresh >muscle and a skin biopsy (January 2002). He also performed several tests >including the infamous " exercise bike " test which showed a major problem >with Dewayne's ammonia levels. The other biopsies showed COX deficiencies >among other problems. I believe the Dr. was the one who did the >fibroblast studies. Dr. Haller's lab is called the Environmental Exercise >Institute or something like that. I could look it up if anyone needs it. >Didn't mean to go so long but I cut it as short as possible. Even though >I don't post often (it's busy farming season) I do read every few days and >pray for each of you. >Love, Lynda R. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 Dr. Haller is the doctor of choice of the MDA clinics in our area for diagnosis of metabolic disease. They refer all likely mito patients to him. I know quite a few patients who have seen him and he is excellent by all accounts. Specific comments have been: " He's a genius. " " He's an unusually caring person. " Barbara _____ From: [mailto: ] On Behalf Of Lynda and Dewayne Rose Sent: Wednesday, June 29, 2005 5:05 AM To: Subject: fresh biopsies Hi All, Have been quiet for some time but thought I'd throw in my two cents worth. Dewayne (DW) had a frozen biopsy sent to Athena in 2000......a few irregular muscle threads was all that came back. After several more trips to the hospital for rhabdo and severe pain, the drs in Lexington sent him to Ohio State to Dr. Kissel (head of MDA clinic) in Nov of 01. He took one look at Dewayne and asked if we knew anyone in Texas? He said there were 3 places he would recommend...1. New York, 2.Texas & 3. Somewhere in Amsterdam. It was right after Sept 11 and there was still alot of confusion and problems flying into New York. I knew DW couldn't make it overseas, so Texas was chosen. We flew to Dallas to Southwestern to Dr. Ron Haller, who did a fresh muscle and a skin biopsy (January 2002). He also performed several tests including the infamous " exercise bike " test which showed a major problem with Dewayne's ammonia levels. The other biopsies showed COX deficiencies among other problems. I believe the Dr. was the one who did the fibroblast studies. Dr. Haller's lab is called the Environmental Exercise Institute or something like that. I could look it up if anyone needs it. Didn't mean to go so long but I cut it as short as possible. Even though I don't post often (it's busy farming season) I do read every few days and pray for each of you. Love, Lynda R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 I want to sign up for a clinical trial they are having at his lab (actually one of his colleagues I think), where they are testing mitochondria before and after an intense exercise program. I already do intense exercise once or twice per week, and feel better for 12 - 24 hours afterwards. I can't warm up though, I have to " get aerobic " right away. Most people don't understand that I have trouble walking more than 50 feet, but can play sports. Unfortunately, they need genetic results for me to join the trial, so that's another reason we're waiting for my genetic results... Take care, RH > Dr. Haller is the doctor of choice of the MDA clinics in our area for > diagnosis of metabolic disease. They refer all likely mito patients to him. > I know quite a few patients who have seen him and he is excellent by all > accounts. Specific comments have been: " He's a genius. " " He's an unusually > caring person. " > > > > Barbara > > > > _____ > > From: [mailto: ] On Behalf > Of Lynda and Dewayne Rose > Sent: Wednesday, June 29, 2005 5:05 AM > To: > Subject: fresh biopsies > > > > Hi All, > Have been quiet for some time but thought I'd throw in my two cents worth. > Dewayne (DW) had a frozen biopsy sent to Athena in 2000......a few irregular > muscle threads was all that came back. After several more trips to the > hospital for rhabdo and severe pain, the drs in Lexington sent him to Ohio > State to Dr. Kissel (head of MDA clinic) in Nov of 01. He took one > look at Dewayne and asked if we knew anyone in Texas? He said there were 3 > places he would recommend...1. New York, 2.Texas & 3. Somewhere in > Amsterdam. It was right after Sept 11 and there was still alot of confusion > and problems flying into New York. I knew DW couldn't make it overseas, so > Texas was chosen. > We flew to Dallas to Southwestern to Dr. Ron Haller, who did a fresh muscle > and a skin biopsy (January 2002). He also performed several tests including > the infamous " exercise bike " test which showed a major problem with > Dewayne's ammonia levels. The other biopsies showed COX deficiencies among > other problems. I believe the Dr. was the one who did the > fibroblast studies. Dr. Haller's lab is called the Environmental Exercise > Institute or something like that. I could look it up if anyone needs it. > Didn't mean to go so long but I cut it as short as possible. Even though I > don't post often (it's busy farming season) I do read every few days and > pray for each of you. > Love, Lynda R. > > > Quote Link to comment Share on other sites More sharing options...
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