tag:blogger.com,1999:blog-2962097063569112990.post7487165458687660234..comments2023-06-26T04:01:30.623-05:00Comments on Alysons CFIDS Blog: Mitochondrial Myopathy?alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-2962097063569112990.post-35793934331310290982013-03-24T12:02:10.043-05:002013-03-24T12:02:10.043-05:00Hi Stephanie - I'm so sorry to hear about your...Hi Stephanie - I'm so sorry to hear about your mom's struggles. I'm not a doctor, but I strongly suggest your mom see someone who specializes in mitochondrial diseases. (If your mom has already seen a specialist, a second opinion might be in order since she is suffering so much.) <br /><br />I've found that most of the mito doctors are associated with pediatric departments or children's hospitals but quite a few seem to be willing to see adult patients. My own specialist is based at a children's hospital. I always confuse the staff when I check in for my appointment because they ask if I'm "Alyson's mom"!<br /><br />I found my mito specialist from one of the mito disease websites (can't remember which one). I actually had to call a couple of different doctor's offices to ask if they would see an adult. Here are some links with doctors' names that may help: <br /><br />* http://www.mitoaction.org/forums/list-mito-specialists<br />* http://mitosoc.org/blogs/diagnosis/providers/<br /><br />I've also found these websites to be user-friendly in terms of learning more about mitochondrial disease: <br /><br />* http://www.umdf.org<br />* http://www.mitoaction.org/<br /><br />Best of luck! My email address is cfidsalyson@sbcglobal.net. alysonhttps://www.blogger.com/profile/12965588211524276512noreply@blogger.comtag:blogger.com,1999:blog-2962097063569112990.post-23294341615335521712013-03-24T09:32:49.508-05:002013-03-24T09:32:49.508-05:00Hi Alyson! My name is Stephanie Koleno. My mom suf...Hi Alyson! My name is Stephanie Koleno. My mom suffers with Mitochondrial Myopothy with high lactic acid. I watch her struggle everyday and have been despirately been trying to find help for her for her conditions are worsening I saw you blogged that you are going to see a mitochondrial specialist if you find them or anyone else of any help I would greatly appriciate it if you would contact me with information. Im despirate for help I will go to any lengths to find help for her. My cell phone number is 814-409-8072 I get text messages and calls please contact me if you have ANY helpful information. And if I can be of any help or support to you please contact me. THANK YOU!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2962097063569112990.post-58152522454475045582013-03-21T12:52:55.338-05:002013-03-21T12:52:55.338-05:00Hi Lauren - I'm not going to lie, the EMG was ...Hi Lauren - I'm not going to lie, the EMG was extremely unpleasant with moments of sharp pain. After all, it does involve using a needle! However, the pain did not last. I was exhausted afterwards, but I was not in any pain. Though I would not choose to get another EMG unless absolutely necessary, I'm glad I had it done this time around because it confirmed my my muscle difficulty was NOT in my imagination. It also confirmed the need for further testing. Still, I would rather have another EMG than another muscle biopsy!alysonhttps://www.blogger.com/profile/12965588211524276512noreply@blogger.comtag:blogger.com,1999:blog-2962097063569112990.post-35358666497866388052013-03-21T12:02:26.679-05:002013-03-21T12:02:26.679-05:00Hi! I am in the same situation as you. I am gett...Hi! I am in the same situation as you. I am getting an EMG Monday. I am very worried this is going to be painful/uncomfortable after reading what you wrote. Please let me know, how are you doing now?Laurennoreply@blogger.comtag:blogger.com,1999:blog-2962097063569112990.post-23364144935219844542012-02-11T17:51:40.260-06:002012-02-11T17:51:40.260-06:00Hi upnorth - It would definitely be nice to find s...Hi upnorth - It would definitely be nice to find something that is treatable. I go through periods of accepting my situation and dealing with it and periods of wanting to know if there is actually something else wrong with me.alysonhttps://www.blogger.com/profile/12965588211524276512noreply@blogger.comtag:blogger.com,1999:blog-2962097063569112990.post-29351369359328640922012-02-09T11:31:24.706-06:002012-02-09T11:31:24.706-06:00I applaud you for seeking out all possible diagnos...I applaud you for seeking out all possible diagnoses. I think I've just given up. Wouldn't it be nice, though, if you found something that's actually treatable? I know someone who had "m.e/cfs" and found a diagnosis of movement disorder/parkisons and the medications help her tremendously. I hope you have a similar experience, in any case no stone will be left unturned, right?upnorthhttps://www.blogger.com/profile/04283010424792189579noreply@blogger.com