Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Hi Wanda, Although I've been sick for most of my life, my primary care doctor had never heard of mito until last Spring. He immediately thought of me. I then spent 8 months getting blood tests, urine tests, waiting for a biopsy and for the biopsy results. During the testing and waiting and not-knowing, I used this group and online info to learn more. At first I thought I would need a medical degree to understand my situation! But now I feel that even though I can't understand the science of this too well(and there's a lot that doctors don't know, either), I can understand some basics enough to take care of myself well. For you, it must be overwhelming right now with all this new information. And even with all the scientific findings you have, where there is always uncertainty about how this disease will behave. But I bet over time you will also feel that you know enough. I don't have the specific test results that you have. (My diagnosis is " clinical, " meaning they don't have hard-core lab proof but enough symptoms and tests point to mito that they're treating me for it anyway). So perhaps others in the group will respond to the specific results. But from reading what everyone says, I'm not sure that each person with similar specific results always has the same symptoms or needs to care for themselves in identical ways. Has your doctor started you on any of the mito cocktail ingredients? That seems like one of the most important steps for most of us. I started with carnitine because early on we discovered I was carnitine deficient. Now I'm adding in the CoQ10--it's been taking awhile for me to find the right dose. Then, I have a list of about 12 other things my doctor wants me to add in one at a time. The carnitine and CoQ10 are already helping a little. For me, I've found that tuning into the lifestyle issues that affect my health has been really helpful. Personally, I make sure to be as mobile and active as I can without pushing too much. It's a balance of rest and activity that is individual to me. Then, making sure that I'm getting enough good nutrition and drinking plenty is essential. I also have home help (which the state pays for). The help I receive conserves my energy and keeps me from overdoing it--especially on days when my symptoms are worse. I'm also careful about keeping my body temperature stable (not easy for me because I have dysautonomia), getting enough sleep (even though I need medication to do that), and avoiding people with viruses. These things help me. Anyway, I know you're looking for more help with your specific results. I'm sure someone will address that. I encourage you to use this group a lot!! Best, Shayna > > How did the doctors conclude that your girls had abnormalities in > >Complex I, III, IV and ANT function. What tests were performed? > > > >What kind ofvitamins and other supplements do your girls take. > > > > > > I did not have much problem with my vision until recently, when I went > >on a low carb diet. Prior to this I had suffered from an eye infection, it > >is only now that I have come to know that mito disease sufferers should eat > >three regular meals. > > > >Can you let me know the names of institutes in US, where such genetic > >analysis is done on a research basis, > > > >Have your girls ever tried any alternative medicine > > > > > > > > > > > >Joanne Kocourek (mom to , lies, and ) > >visit us at: http://www.caringbridge.org/il/annakris > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Wanda I'm glad you are getting the answers you need, even if they are confusing. I agree with Shayna that making like style changes to fit the day is very important. When I got my first scooter for outside the house, it made such a difference. My test results are out in my van, but I will look at them next week and get back to you. I will also send you some info privately (some of it is long) which you might find helpful. Take care and you will be surprised how quickly you will become knowledgeable. For most of us, we have to have the knowledge as the many docs don't. laurie > Hello everyone, > > It is Wanda from Australia here, I haven't posted lately due to very ill > health and 2 Hospital visits. > I am so new to these groups, I marvel at how you can banter around your > great knowledge for the benefit of us still learning. > My Mito is progressing and has been like this for 6 months now. I have had > 3 > Muscle biopsies (2 needle and one large muscle) My diagnosis has alterd > over > 6 1/2 years due to technology in the DNA testing procedures. I was given > the > initial diagnosis of Mitochondrial Myopathy in 1998 but since seeing my > latest Neurologist and having a new biopsy she has told me it is > Mitochondrial Cytopathy. I have seen my test and it said numerous cox > negative fibres and " ragged red " fibres with type 2B fibre atrophy. > COX1gene-nucleotide position 5904-7445 > reveals a G-A change in position 6261 and C-T change in position 7028. > Cytochrome B Oxidase deficiency. > Some fresh and some frozen testing was done and is still being done on > frozen muscle in the future. > To a layman it is so confusing being that their are so many variations of > this disease. All I know is that I now need a shower chair a walking stick > and a wheelchair for outside journeys. > I do hope that we can get to know each other in the future and I hope to > hear from you all,and if anyone else has similar testing results I would > love to hear from you. > Stay safe > Regards Wanda > > > > > >Reply-To: > >To: > >Subject: Re: please help > >Date: Thu, 2 Mar 2006 16:23:14 -0800 (PST) > > > > >The diagnosis was obtained by skin fibroblast studies and fresh muscle > >biopsies. (Multiple). > > > >My girls take the following: Coenzyme Q10 (very high doses), Carnitor, > Vit > >E, High dose riboflavin, B50 Complex, Vit C, Niacinamide, Selenium, Alpha > >Lipoic Acid, a mulitvitamin, and multiple meds to address each of the > >affected organ systems. This is considered a component of alternative > >medicine. Over time we've tried guided imagry, biofeedback, massage, etc > >without any improvement. > > > >They are on a high, complex carb, very low fat diet with 5-6 smaller meals > >each day and lots of oral fluids (3,000-3500cc). > > > >AS far as I know the genetics studies are being done in Atlanta, UC > Irvine, > >possibly Columbia and UCSF. > > > >medical question mark medical_questionmark@...> wrote: > > How did the doctors conclude that your girls had abnormalities in > >Complex I, III, IV and ANT function. What tests were performed? > > > >What kind ofvitamins and other supplements do your girls take. > > > > > > I did not have much problem with my vision until recently, when I went > >on a low carb diet. Prior to this I had suffered from an eye infection, it > >is only now that I have come to know that mito disease sufferers should > eat > >three regular meals. > > > >Can you let me know the names of institutes in US, where such genetic > >analysis is done on a research basis, > > > >Have your girls ever tried any alternative medicine > > > > > > > > > > > >Joanne Kocourek (mom to , lies, and ) > >visit us at: http://www.caringbridge.org/il/annakris > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 --- wanda ramsdell jordyalan@...> wrote: I was given the > initial diagnosis of Mitochondrial Myopathy in 1998 > but since seeing my > latest Neurologist and having a new biopsy she has > told me it is > Mitochondrial Cytopathy. Wanda, The change in the wording from mitochondrial myopathy to mitochondrial cytopathy is probably more a matter in changes in diagnostic terminology than anything. Myo- refers to muscles; cyto- refers to cells. The term pathy means disease state. Bruce Cohen, MD and others have suggested that mitochondrial myopathy and mitochondrial encephaolpathy (disease of the brain) and even mitochondrial encephalomyopathy (brain and muscle) be changed to mitochondrial cytopathy. The reason for this change is that mito causes disease in many, if not most, of the cells of the body. It is a disease of the cells of the body and their use of energy. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.