Guest guest Posted June 6, 1999 Report Share Posted June 6, 1999 Greetings everyone, Thank you for admitting me to this list. My husband Rick, 53 years old , has been diagnosed with MELAS since '93 ( following 3 stroke-like episodes-6/'92, 10/'92 and 4/'93- that were misdiagnosed and treated as viral encephalitis until a brain biopsy in 5/93 came up negative for infection ). " MELAS-3243 point mutation " was diagnosed by mito-DNA analysis at Dr. Wallace's lab at Emory in 6/'93. I feel very lucky we got such a quick diagnosis compared to others I read about. Rick sees Dr. Cohen at Cleveland Clinic and I am very pleased with his care and level of personal concern. The reason he may not have responded personally to your letters and E-mail, , is that he receives an average of 200 E-mails each day. He only sees adult patients that have all ready been diagnosed with a mito disorder. I don't know his policy on children, but you may want to set up an appointment with him in person, rather than asking for advice by mail or phone. He is wonderful in person and was the only doctor in Cleveland that knew about Mito before we came to see him. Otherwise, I have been carrying this huge notebook and copying articles for every other doctor/dentist Rick has ever seen, except when we flew to Columbia-Presbyterian in NYC to be part of Dr. DiVivo's research in 4/'98. About meds to avoid: Depakote-sodium valproate (seizure) Phenobarbital (seizure} Chloramphenicol (antibiotic) Tetracycline (antibiotic family with 3 more kinds) All -mycin antibiotics: Erythromycin,Biaxin. The cephalosporins-Keflex, Ceclor, Ceftin are okay Aspirin,Tylenol- Dr. Cohen recommended only Ibuprofen at his Cleveland talk on 5/16/99. MSG, Nutrasweet- Gatorade is best to drink rather than pop, soda, iced tea, lemonade because it replaces the electrolytes (Personally, Rick had a terrible reaction to codeine- nearly went into a coma because he could not metabolize it) Careful with any anesthetics- check with mito doctor first. Rick takes at least 3 days to excrete an anesthetic by breathing it out- a real fruity odor to his breath. Dr. Cohen's talk was wonderful, complete with handouts and slides to illustrate all these difficult concepts. It was also GREAT to meet so many people I've read on these Mito-Lists! I'd really enjoy a second meeting. Hope this helps. Any adult-onset Mito folks are welcome to contact me for further sharing. It's a very different life when this adult-onset strikes your family. Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 1999 Report Share Posted June 6, 1999 Hi , Welcome to this list! It was great to meet you in Cleveland at Dr. Cohen's conference. This is a great list with lots of good information sharing. Welcome. Barbara mom to Alison/21/melas liver transplant due to depakote toxicity In a message dated 6/6/99 7:59 Eastern Daylight Time, sbiasella@... writes: > It was also GREAT to meet so > many people I've read on these Mito-Lists! I'd really enjoy a second > meeting. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 1999 Report Share Posted June 6, 1999 , Thank you for your insight as to possible cause of no response from Dr. Cohen. That makes perfect sense. Knowing this makes me understand it was in no way my fault or his, just the way it is with the way things are, very helpful . I also know now that perhaps it would be helpful for me to let him know the reason I thought he may be interested in our family is because of the possible connection between mito and ADHD which someone else suggested he may be interested in. Even if I find help elsewhere he may want to have that information. Do you or does anyone on this list know how to get video or written information from his conferance for those of us who were not able to be there in person? I am sorry for the problems you and your husband have had to deal with and happy you were able to get the help you have. S. Re: Meds to avoid > > >Greetings everyone, > Thank you for admitting me to this list. My husband Rick, 53 years old >, has been diagnosed with MELAS since '93 ( following 3 stroke-like >episodes-6/'92, 10/'92 and 4/'93- that were misdiagnosed and treated as >viral encephalitis until a brain biopsy in 5/93 came up negative for >infection ). " MELAS-3243 point mutation " was diagnosed by mito-DNA >analysis at Dr. Wallace's lab at Emory in 6/'93. I feel very lucky we >got such a quick diagnosis compared to others I read about. > Rick sees Dr. Cohen at Cleveland Clinic and I am very pleased with his >care and level of personal concern. The reason he may not have responded >personally to your letters and E-mail, , is that he receives an >average of 200 E-mails each day. He only sees adult patients that have >all ready been diagnosed with a mito disorder. I don't know his policy >on children, but you may want to set up an appointment with him in >person, rather than asking for advice by mail or phone. He is wonderful >in person and was the only doctor in Cleveland that knew about Mito >before we came to see him. Otherwise, I have been carrying this huge >notebook and copying articles for every other doctor/dentist Rick has >ever seen, except when we flew to Columbia-Presbyterian in NYC to be >part of Dr. DiVivo's research in 4/'98. > About meds to avoid: > Depakote-sodium valproate (seizure) > Phenobarbital (seizure} > Chloramphenicol (antibiotic) > Tetracycline (antibiotic family with 3 more kinds) > All -mycin antibiotics: Erythromycin,Biaxin. The >cephalosporins-Keflex, Ceclor, Ceftin are okay > Aspirin,Tylenol- Dr. Cohen recommended only Ibuprofen at his >Cleveland talk on 5/16/99. > MSG, Nutrasweet- Gatorade is best to drink rather than pop, soda, iced >tea, lemonade because it replaces the electrolytes > (Personally, Rick had a terrible reaction to codeine- nearly went into >a coma because he could not metabolize it) > Careful with any anesthetics- check with mito doctor first. Rick takes >at least 3 days to excrete an anesthetic by breathing it out- a real >fruity odor to his breath. > > Dr. Cohen's talk was wonderful, complete with handouts and slides to >illustrate all these difficult concepts. It was also GREAT to meet so >many people I've read on these Mito-Lists! I'd really enjoy a second >meeting. > Hope this helps. Any adult-onset Mito folks are welcome to contact me >for further sharing. It's a very different life when this adult-onset >strikes your family. > Sincerely, > >------------------------------------------------------------------------ >With more than 18 million e-mails exchanged daily... >http://www.onelist.com >...ONElist is THE place where the world talks! >------------------------------------------------------------------------ >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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